Gluten Intolerance / Celiac Disease Diagnosis
no_more_weighting
Posts: 57 Member
Hello everyone, I'm so glad I found this group! 
I've been eating gluten free for two weeks now. I bought two books on the topic, started experimenting with gluten free baking and even my husband is very supportive! I wanted to try what it can do for me, because I've been having many health issues I just didn't know what to do about. It looks like that gluten really could be the source of my problems, because I haven't had any of the GI tract issues, no pain in my knees, tiredness, dizziness or anxiety. Even the bumps on my upper arms are starting to clear away and my belly doesn't itch anymore! :blushing: I though it'd be good to try gluten free diet for a month and then reintroduce gluten into my diet and see if my symptoms return. Well, I'm not too keen on the reintroduction anymore! :laugh: Would like to see a doctor and have some tests done, to confirm my suspicion. I'm on a health plan, but I'm not sure how much the ins. company's willing to pay. Can someone tell me how much the gluten sensitivity tests cost here in the U.S.? I know there're many tests that can be done and that I might be eating gluten for them to reveal the sensitivity - I'd like to know someone's real past experience with the GI diagnosis. :flowerforyou: Thank you!!
I've been eating gluten free for two weeks now. I bought two books on the topic, started experimenting with gluten free baking and even my husband is very supportive! I wanted to try what it can do for me, because I've been having many health issues I just didn't know what to do about. It looks like that gluten really could be the source of my problems, because I haven't had any of the GI tract issues, no pain in my knees, tiredness, dizziness or anxiety. Even the bumps on my upper arms are starting to clear away and my belly doesn't itch anymore! :blushing: I though it'd be good to try gluten free diet for a month and then reintroduce gluten into my diet and see if my symptoms return. Well, I'm not too keen on the reintroduction anymore! :laugh: Would like to see a doctor and have some tests done, to confirm my suspicion. I'm on a health plan, but I'm not sure how much the ins. company's willing to pay. Can someone tell me how much the gluten sensitivity tests cost here in the U.S.? I know there're many tests that can be done and that I might be eating gluten for them to reveal the sensitivity - I'd like to know someone's real past experience with the GI diagnosis. :flowerforyou: Thank you!! 0
Replies
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My allergist doctor told me that there are no test for a sensitivity to wheat/gluten.0
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There are blood tests and biopsies for Celiac. Not sure if they Wheat/Gluten is included as the dangon doctor will not return my calls.
My experience was that I was Gluten free for a month when my Gastro appt came up. I TOLD him (not that he heard me) that I had not had gluten for a month, and all my symptoms I had been having for almost a year.
I told him I had stopped bread/pasta, then decided no gluten after reading up on the internet given severe IBS and refulx ( and I had daily debilitating migraines also) and that I started on a good probiotic and it was making me feel better within a week, after 6 months of horrible pain
He rolled his eyes.
SO I don't trust what he told me about the tests! I do know that my friend with Celiac had a biopsy for final conclusion, but blood tests are where they started.
If you have seen such wonderful results by removing it, isn't the proof in the gluten free pudding? :laugh:
Against all the medical professionals have advised, and tons of money spent on their 'expertise', now that I am GF my migraines are under control, my brain fog lifted, my joint pain went away, the bumps on my arms cleared right up, my rosacea is clearer on my face, and my feet do not hurt after my Sunday shift working at the Diner (I could not walk from my car to the my apt after my shift!!!!) and my IBS and reflux is getting WAY better.
OH and when the test results came back the dr said "Go ahead and eat what you were, you are not allergic or have celiac" in a short message on my machine!!! Never called me back to discuss further. I went back on gluten and ALL my symptoms came back.
No need to convince me again! :grumble:
I tell you all this because I learned much more about my body on my own with THIS issue than with any of the 7 doctors I went to. Most have an attitude that this is just a fad and it is not scientifically backed up.
Only my Neurologist :drinker: me for finding the food trigger and encourages me to continue with this way of eating
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Ladies that you so much for your input!
arewethereyet - this is amazing, thanks so much for sharing your experience!!! I looks like you're a couple of steps ahead of me on our gluten free journey and your information is simply priceless. :flowerforyou:
I've had basically all your symptoms except for the migraines. I guess it is true that we're the best judges when it comes to our own bodies and I guess I don't really need a Dr. confirming what I already know.
It's only been a little over 2 weeks since I decided to go completely GF, but all my symptoms have gone away and I'm feeling so much better already. I guess I'll just do a blood test for Celiac and hopefully I'll meet a Dr. that's more sensible than all the ones you met with! :huh:0 -
Well that is excellent! Amazing when we do figure it out ourselves, huh?
I read on this group that it takes about 6 months for all the symptoms to subside, so I felt a bit better about that. I know I am SO much better, but hope to be 100 percent in my life once again.
:drinker: here's to us for using our noggins to figure out our issues0 -
I have had stomach issues for the past several years. Doctor thought it my be my gallbladder-test-not it. So I just dealt with it for awhile. Went to another doctor and was diagnosed with IBS. Dealt with that for a while. My mother suggested that I try giving up wheat products (she has an allergy to it) and see how I feel. I have experimented with this a couple of different times, and every time I feel sooooo much better when I leave the wheat products alone. I wish I would have tried this years ago.0
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I have had stomach issues for the past several years. Doctor thought it my be my gallbladder-test-not it. So I just dealt with it for awhile. Went to another doctor and was diagnosed with IBS. Dealt with that for a while. My mother suggested that I try giving up wheat products (she has an allergy to it) and see how I feel. I have experimented with this a couple of different times, and every time I feel sooooo much better when I leave the wheat products alone. I wish I would have tried this years ago.
Thanks, Robin - so did your doctor run any tests for gluten sensitivity / celiac at all? It sounds as if you are allergic to wheat just like your Mom, good job figuring it out.0 -
The only thing with testing for coeliacs you have to be eating gluten at the time for a positive result.0
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Why do you need a test to confirm what your body is already telling you? Do you need a label?
Just tell people you are Celiac and you'll be ill if you eat it and they'll stop trying to push wheat based products on your like a drug dealer! No one is going to ask for proof!
I know I'm wheat intolerant (same thing) I know this because I cut out all wheat products for one week - then ate some bread. I repeated the experiemnt three times to make sure it wasn't a fluke. Now 2 months on I never eat wheat and my IBS has gone, as has my acid reflux, my migraines, my mood swings, random abdominal pains I used to get have gone, and my weight has dropped by 16lbs because I'm eating more meat and veg instead of bread, pasta, biscuits, pastries etc.
I think you're already onto a great thing - just keep going! :-)0 -
The reason I have a medical diagnosis is that I have access to more services. Because it is a medical condition my doctor runs a blood test every year to make sure that I'm OK.
I can also get food on prescription which again is open to those who have a diagnosis and when I'm a bit older they have said that i will get priority for bone density scans.
There is no need to 'get' a diagnosis but it can be difficult to tell the difference between an allergy, intolerance and coeliacs. It could also be a problem with wheat or gluten. If I eat a bit of gluten I'm ill, my friend eats a piece of wheat and she has to use an epipen and call an ambulance. Also with coeliacs there are other problems that it can cause or mask other symptoms and a good doc will know this.0 -
^^^ this ^^^0
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Wow, not in the US that I know of. I have to pay $5.99 for a box of crackers with 6 servings compared to $3.99 for a box of saltines with 4 tubes of probably 10 servings in each.
I love the Udi's bagels as they have a good texture. $5.99 for 4 in the freezer section. Of course I went to buy another bag and I guess I was the only one buying them, so they didn't order them again.
It does amaze me that my gastro sent me for a gluten blood test when I told him I was off gluten for a month. Waste of money and time:ohwell:0 -
Why do you need a test to confirm what your body is already telling you? Do you need a label?
Just tell people you are Celiac and you'll be ill if you eat it and they'll stop trying to push wheat based products on your like a drug dealer! No one is going to ask for proof!
I know I'm wheat intolerant (same thing) I know this because I cut out all wheat products for one week - then ate some bread. I repeated the experiemnt three times to make sure it wasn't a fluke. Now 2 months on I never eat wheat and my IBS has gone, as has my acid reflux, my migraines, my mood swings, random abdominal pains I used to get have gone, and my weight has dropped by 16lbs because I'm eating more meat and veg instead of bread, pasta, biscuits, pastries etc.
I think you're already onto a great thing - just keep going! :-)
Thanks for your reply - yes, you're right, I probably shouldn't need a "label", but do I want a "label"? Yes, I do. I'm the sort of person that needs a confirmation, to be sure that I'm not imagining stuff, LOL. I also think that if I do have Celiac, it'd be important to know about it, since there're other issues associated with the disease. My other reason for the medical diagnosis is that Celiac is genetic. My younger brother has been suffering from ulcerative colitis for the past 6 months (I had that in the past also, but the acute form hasn't returned) and I have a strong feeling that our problems are caused by gluten. It just makes sense. However, my brother is a very, I mean very skeptical person (even more than me, heh), so for him to even consider that his diet might be behind his health issues, I'll have to serve him MY diagnosis on a silver platter! :-D
Plus - I'm not sure about prescription for food as Flab2fitfi talks about (here in the U.S.), but the $ difference between regular and gluten free food is tax deductible (which I just found out a week ago) - so if I have the diagnosis from a Dr., I'd be deducting like crazy!! :-D0 -
The reason I have a medical diagnosis is that I have access to more services. Because it is a medical condition my doctor runs a blood test every year to make sure that I'm OK.
I can also get food on prescription which again is open to those who have a diagnosis and when I'm a bit older they have said that i will get priority for bone density scans.
There is no need to 'get' a diagnosis but it can be difficult to tell the difference between an allergy, intolerance and coeliacs. It could also be a problem with wheat or gluten. If I eat a bit of gluten I'm ill, my friend eats a piece of wheat and she has to use an epipen and call an ambulance. Also with coeliacs there are other problems that it can cause or mask other symptoms and a good doc will know this.
Amazing! Are you in the U.K.? It sounds to me like an NHS thing. The only thing I know of here in the U.S. is that the $ difference between regular and gluten free food is tax deductible, and that's only if we itemize our deductions. Still would make a difference for me I think...0 -
Wow, not in the US that I know of. I have to pay $5.99 for a box of crackers with 6 servings compared to $3.99 for a box of saltines with 4 tubes of probably 10 servings in each.
I love the Udi's bagels as they have a good texture. $5.99 for 4 in the freezer section. Of course I went to buy another bag and I guess I was the only one buying them, so they didn't order them again.
It does amaze me that my gastro sent me for a gluten blood test when I told him I was off gluten for a month. Waste of money and time:ohwell:
I better be fast if I want the gluten blood test work - I'll make an appt. today. I've only been off gluten for 2 weeks.0 -
The reason I have a medical diagnosis is that I have access to more services. Because it is a medical condition my doctor runs a blood test every year to make sure that I'm OK.
I can also get food on prescription which again is open to those who have a diagnosis and when I'm a bit older they have said that i will get priority for bone density scans.
There is no need to 'get' a diagnosis but it can be difficult to tell the difference between an allergy, intolerance and coeliacs. It could also be a problem with wheat or gluten. If I eat a bit of gluten I'm ill, my friend eats a piece of wheat and she has to use an epipen and call an ambulance. Also with coeliacs there are other problems that it can cause or mask other symptoms and a good doc will know this.
Amazing! Are you in the U.K.? It sounds to me like an NHS thing. The only thing I know of here in the U.S. is that the $ difference between regular and gluten free food is tax deductible, and that's only if we itemize our deductions. Still would make a difference for me I think...
Yes i'm in the UK so without a diagnosis DRs tend to be less helpful..0 -
Wow, not in the US that I know of. I have to pay $5.99 for a box of crackers with 6 servings compared to $3.99 for a box of saltines with 4 tubes of probably 10 servings in each.
I love the Udi's bagels as they have a good texture. $5.99 for 4 in the freezer section. Of course I went to buy another bag and I guess I was the only one buying them, so they didn't order them again.
It does amaze me that my gastro sent me for a gluten blood test when I told him I was off gluten for a month. Waste of money and time:ohwell:
I better be fast if I want the gluten blood test work - I'll make an appt. today. I've only been off gluten for 2 weeks.
So appointment made for next Wednesday. Will update. :-)0 -
The reason I have a medical diagnosis is that I have access to more services. Because it is a medical condition my doctor runs a blood test every year to make sure that I'm OK.
I can also get food on prescription which again is open to those who have a diagnosis and when I'm a bit older they have said that i will get priority for bone density scans.
There is no need to 'get' a diagnosis but it can be difficult to tell the difference between an allergy, intolerance and coeliacs. It could also be a problem with wheat or gluten. If I eat a bit of gluten I'm ill, my friend eats a piece of wheat and she has to use an epipen and call an ambulance. Also with coeliacs there are other problems that it can cause or mask other symptoms and a good doc will know this.
Amazing! Are you in the U.K.? It sounds to me like an NHS thing. The only thing I know of here in the U.S. is that the $ difference between regular and gluten free food is tax deductible, and that's only if we itemize our deductions. Still would make a difference for me I think...
Yes i'm in the UK so without a diagnosis DRs tend to be less helpful..
I hear ya. I think we have the same system in my native country, Czech - I'd definitely need the diagnosis over there too. Things are a little different here behind the Atlantic, the main difference is that I'll have to spend some $$! :-b0 -
Wow, not in the US that I know of. I have to pay $5.99 for a box of crackers with 6 servings compared to $3.99 for a box of saltines with 4 tubes of probably 10 servings in each.
I love the Udi's bagels as they have a good texture. $5.99 for 4 in the freezer section. Of course I went to buy another bag and I guess I was the only one buying them, so they didn't order them again.
It does amaze me that my gastro sent me for a gluten blood test when I told him I was off gluten for a month. Waste of money and time:ohwell:
I better be fast if I want the gluten blood test work - I'll make an appt. today. I've only been off gluten for 2 weeks.
So appointment made for next Wednesday. Will update. :-)
Let us know how it goes.... and for those that are able to write off the GF food on their taxes... can you post here about what is required to do that? I've been off gluten since October (for the most part, other than finding out accidentally when products do have gluten in them!)... so I guess I would need a doctor diagnosis as well? Any input would be appreciated....0 -
I found this great explanation of what's needed to be able to deduct gluten free food from your taxes:
http://www.glutenfreecookingschool.com/archives/is-the-tax-deduction-for-gluten-free-food-worth-the-hassle/0 -
I just did a book review/summary on my blog.... go to faithfulleigh.blogspot.com and you can see in there somewhere (latest entry) the names of the blood tests. BUT what I did read is to have the tests done you need to have gluten in your system. I'm on day three gluten free and so far so good, I was thinking of doing the bloodwork (could be covered by insurance, you'd have to call) but I don't want to reintroduce gluten to take a test that I know will tell me gluten is the issue.0
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I found this really helpful information on gluten sensitivity testing:
http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Sensitivity-Testing.htm0 -
So here's my update - went to my doctor, who was very nice & listened to all I had to say (which was a lot, hih), asked questions and told me that I've done a good job on self diagnosing. She said that it's clear I have problems with gluten, most likely Celiac disease, and would like to run tests to confirm that, but for that I'd have to be on gluten for at least 2 weeks and she'd hate for me to eat gluten ever again. So she'll do some research to see if there are some other ways and we'll meet again. In the mean time, I'll have some regular blood work done (I curious to see my iron levels), got some acid reflux meds (likely non-related to gluten, I don't know...) and got referral to a throat Dr due to chronic throat/tonsil issues (also likely non-related to gluten).0
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So here's my update - went to my doctor, who was very nice & listened to all I had to say (which was a lot, hih), asked questions and told me that I've done a good job on self diagnosing. She said that it's clear I have problems with gluten, most likely Celiac disease, and would like to run tests to confirm that, but for that I'd have to be on gluten for at least 2 weeks and she'd hate for me to eat gluten ever again. So she'll do some research to see if there are some other ways and we'll meet again. In the mean time, I'll have some regular blood work done (I curious to see my iron levels), got some acid reflux meds (likely non-related to gluten, I don't know...) and got referral to a throat Dr due to chronic throat/tonsil issues (also likely non-related to gluten).
When I started taking the reflux meds at bedtime, my throat and coughing stopped. I was simply amazed I had lived with what I had thought was allergies for all those years when in fact it was acid slipping into the throat at night.0 -
So here's my update - went to my doctor, who was very nice & listened to all I had to say (which was a lot, hih), asked questions and told me that I've done a good job on self diagnosing. She said that it's clear I have problems with gluten, most likely Celiac disease, and would like to run tests to confirm that, but for that I'd have to be on gluten for at least 2 weeks and she'd hate for me to eat gluten ever again. So she'll do some research to see if there are some other ways and we'll meet again. In the mean time, I'll have some regular blood work done (I curious to see my iron levels), got some acid reflux meds (likely non-related to gluten, I don't know...) and got referral to a throat Dr due to chronic throat/tonsil issues (also likely non-related to gluten).
When I started taking the reflux meds at bedtime, my throat and coughing stopped. I was simply amazed I had lived with what I had thought was allergies for all those years when in fact it was acid slipping into the throat at night.
Great discovery! Can I ask what reflux meds are you taking at bedtime? I always thought they're best taken in the morning, but your strategy might be better fit for me!0 -
So here's my update - went to my doctor, who was very nice & listened to all I had to say (which was a lot, hih), asked questions and told me that I've done a good job on self diagnosing. She said that it's clear I have problems with gluten, most likely Celiac disease, and would like to run tests to confirm that, but for that I'd have to be on gluten for at least 2 weeks and she'd hate for me to eat gluten ever again. So she'll do some research to see if there are some other ways and we'll meet again. In the mean time, I'll have some regular blood work done (I curious to see my iron levels), got some acid reflux meds (likely non-related to gluten, I don't know...) and got referral to a throat Dr due to chronic throat/tonsil issues (also likely non-related to gluten).
When I started taking the reflux meds at bedtime, my throat and coughing stopped. I was simply amazed I had lived with what I had thought was allergies for all those years when in fact it was acid slipping into the throat at night.
Great discovery! Can I ask what reflux meds are you taking at bedtime? I always thought they're best taken in the morning, but your strategy might be better fit for me!
It was weird. I didn't know I have reflux at all until I had an endoscopy as an after thought while already going under for a colonoscopy. They found a hiatal hernia and an erosion. When I awoke, he asked if I was nauseas in the morning, or had sore throat, coughing, or burning. I told him I thought I was sick from emotional distress from the divorce (which he said does trigger the symptoms) Anyway they found H Pylori virus and I took heavy antibiotics. Those lead to the IBS getting super bad. (killed the good as well as the bad bacteria)
The Prilosec was doing nothing and I was taking 40 mg in the morning. Still waking up with all the same symptoms. One day I forgot to take them, so took them at bed time. Viola, first morning in as long as I can remember I awoke with very little 'morning sickness' and my throat wasn't sore. No coughing at all. I always thought it was sore from snoring!!
I have learned so much more all on my own than any doctor has taught me! For me it is ALL tied together. My stomach, the gluten, the migraines, the reflux........all tied together and working against each other.
Hope you are on the way to feeling better!0 -
So my blood test results came back, all normal, including iron and B12 levels. I'm not sure how likely am I a Celiac with normal levels of iron and B12 though - will see the numbers soon, want to see just how "normal" those levels are. I found out that the reflux meds (Lansoprazole - Prevacid) give me diarrhea, so I've stopped taking them - gave me a scare, wasn't sure why the diarrhea came back, till I read the side effects and checked it online to confirm that it's a very common side effect indeed. :ohwell:0
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Just to throw in a little info here--I have celiac disease and my blood work came back normal for both iron and B12. While there are antibodies that your doctor can check in blood work to see if it's likely that you have celiac, the only 100% sure way to know is to have an endoscopic biopsy. This can tell if the villi in your small intestine have been damaged by the disease. (My villi were "profoundly damaged" according to the lab.) And yes, you do have to be eating gluten for any test for celiac to work. My doctor scheduled my biopsy one week after she got the blood results of my antibody levels back--I think I ate nothing but bread and pasta that whole week!!
All that to say--while iron and B12 can be indicators, it's possible to have celiac with those numbers in the normal range.0 -
I told him I thought I was sick from emotional distress from the divorce (which he said does trigger the symptoms) Anyway they found H Pylori virus and I took heavy antibiotics. Those lead to the IBS getting super bad. (killed the good as well as the bad bacteria)
I have learned so much more all on my own than any doctor has taught me! For me it is ALL tied together. My stomach, the gluten, the migraines, the reflux........all tied together and working against each other.
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Here's an interesting article from the American Journal of Epidemiology in 2013: RE: Decreased Risk of Celiac Disease in Patients with Helicobacter Pylori Colonization. Interesting end of the Medscape article and study: "Additional studies may be warranted for confirmation and to examine whether H. pylori could modulate gluten immunogenicity among genetically susceptible hosts."
The article is quite technical because it is for health professionals (I have a physio background) - you could bring it to your doc's attn. http://www.medscape.com/viewarticle/817671_4
"Acknowledgments:
B.L. was supported by the National Center for Advancing Translational Sciences, National Institutes of Health (grant KL2 TR000081). M.J.B. was supported by the National Institutes of Health (grant R01 GM63270) and the Diane Belfer Program in Human Microbial Ecology. J.F.L. was supported by Örebro University Hospital, Karolinska Institutet, the Swedish Society of Medicine, the Swedish Research Council–Medicine (grant 522-2A09-195), and the Swedish Celiac Society.
Selected findings from this study were presented at the Digestive Disease Week conference in Orlando, Florida, on May 18, 2013. "0 -
Let us know how it goes.... and for those that are able to write off the GF food on their taxes... can you post here about what is required to do that? I've been off gluten since October (for the most part, other than finding out accidentally when products do have gluten in them!)... so I guess I would need a doctor diagnosis as well? Any input would be appreciated....
In Canada we can write off the difference in cost between a regular food and its GF equiv. Some Grocery Stores even have a GF mark on the till tape so it is easy to spot. We have to keep our receipts and total difference at the end of the year is taken off of our tax as part of our Medical Tax Credit same as prescriptions, glasses, dentures or other dental work, crutches, walkers, etc. For me - I don't even bother since I try not to use GF substitutes for processed wheat foods anyhow - breads, cakes, cookies, etc and just eat more fresh fruit & veg, meat, fish, eggs, tofu, beans, quinoa, amaranth, and brown rice. The bother isn't worth the tax credit for me.0 -
It i also possible to have a biopsy come back inconclusive/negative even though you may still have coeliac. My daughter ended up having genetic testing - apparently it is the 'new thing' in coeliac testing. There are markers in your genes which indicate the likelihood of you having the disease. My daughters biopsies both came back inconclusive, as did her genetic testing (she only had one of the predisposition genes, not both) so she is eating gluten and waiting until she gets older/ more poorly before they do another biopsy.
Ask your doc for the genetic test if you still think you may be coeliac but have negative blood tests.
"Celiac disease is caused by an interaction between the celiac disease genes and environment. Strong evidence shows that in order to develop celiac disease, a person must have one or both of two genes known as HLA-DQ2 and HLA-DQ8. The major environmental factor, of course, is gluten ingestion. Gluten proteins interact with the celiac disease genes to trigger an abnormal immune response that damages the lining of the small intestine.
More than 97% of patients with celiac disease have at least one of the two genes. Most patients (more than 90%) carry the DQ2 gene. Fewer than 10% carry the DQ8 gene. In the near future, researchers will likely discover additional genes that predispose an individual to celiac disease. "
Good luck.0
