Disappointed in my allergist

origwvgirl

I've been dealing with knee pain for years along with issues in my blood work that indicated inflammation. I spent years getting poked and prodded with every test imaginable because my white blood cell count was elevated for seemingly no reason (it was elevated for years!). I was tested for RA, leukemia, and numerous other things. I've slowly made progress over the years just by losing 20-30 lbs, working out more, seeing an allergist who put me in Advair for asthma along with allergy shots for seasonal allergies. I still have the lingering knee pain though. Orthopedist said he couldn't see anything but had me try an anti-inflammatory which helped a lot but still doesn't explain it.

Anyways, after having a friend diagnosed with Celiac and reading up on Gluten Free, etc. on MFP and other places, I decided to try going gluten free. Apparently a lot of people said it helps their joint pain. From what I can tell, I definitely feel better if I manage to stay away from gluten (I'm still getting the hang of it). When I was reading the Wheat Belly blog, I ran across the ALCAT food sensitivity test so I asked both my family doctor and my allergist about it.

I was surprised at my allergist's response since I figured she'd be the one that would see the possible connection. However, her response (via her nurse's voicemail) was that "food sensitivity would not cause joint pain"!!!!! She didn't think the ALCAT test was reliable either so has anyone done it?

I'm going to continue to attempt to go gluten free. So far, the only issues I seem to have if I do have gluten is that my knees and hands hurt and I feel lethargic.

FitnessPalWorks

I would see if you can find another doctor that understands that food allergies can affect a person systematically. The fact your allergist is not on board shows he's not keeping up with published journals as he should and is extremely "old school". Perhaps see if there is a (I hate to say it this way but) younger physician in your area who may have actually had food sensitivities like gluten as part of their curriculum in med school. Good luck!

PS - for me, my physician also is quite holistic, and even though she isn't 100% schooled in gluten issues, she totally understood my symptoms, had heard them before and was proud of the fact I had gone gluten free 100+ days and noticed changes on my own.

hdlb

Gluten can definitly cause joint issue, but I don't think many doctors/allergists make that connection or believe its true. Remember this is a pretty new thing for the world, and doctors have been taught certain things, and they usually don't look to food as the cause of medical issues.

The months before I went off gluten I had a major issue with my flexor muscle in my leg, For two weeks I couldn't lift it or walk, one finger swelled up for no reason and I had "tendonitis" in my elvow. I also couldn't move one shoulder to move my arm above my head for almost a week. All those were passed off as other things, but they were 100% from gluten. If I accidently eat something now, all those joints hurt again, but to a lesser extent.

hdlb

You could also see a Naturalpath doctor if you have one around you, they'll be more willing to see the food/injury connection.

akaMrsmojo

My doctor did not even know that there was gluten in beer. SMH

I did my master's paper on it. The problem is the pharmaceutical companies educate doctors on diseases. They get a lot of information from them and they have no interest in educating the medical profession about celiec disease.

Now if Pfizer can come up with a pill to treat it, everyone will have it.

FitnessPalWorks

^^ Isn't THAT the truth.....

joyfulteach

Celiac isn't a food allergy. It acts like an auto immune disease and your body attacks gluten as if its foreign. I would look into finding a doctor who is willing to run the tests. The blood test tests for antibodies so if you aren't eating gluten they won't show up and the test will come back negative. You have to eat gluten and your body produce the antibodies in order to test positive.

akaMrsmojo

An allergy is a immune disorder, I think it is fair to be upset that the Allergist would have an inkling that she had celiac disease. I have food intolerance with a butt-load of allergies. They tie in together. I use to have joint pain in my fingers, when the gluten left my life, so did the joint pain.

FitnessPalWorks

I can say that even my dermatologist knows about allergies!

He saw me with a specific skin issue that is RARE.... and instead of charging me oodles of dollars for unnecessary tests, he told me to get Zyrtec (which is typically for hay fever, not skin issues) and it would fix the issue. Guess what? He was RIGHT.

Some docs get it, some just don't..... and I tell you what, when I go to my dermatologist next time and he sees how cleared up my skin is and how my dry patches have gone away from avoiding gluten, I can guarantee you he won't be surprised.....

akaMrsmojo

The red patches on my face was the first thing that cleared.

hbunting86

Hi

I'm new to this group and new to being gluten free, as was diagnosed as having celiac (btw do you spell it 'celiac' or 'coeliac' - I see both spellings and it's irritating me as I like to spell things right haha) last week by my doctor.

It's a shame that your allergist of all people isn't receptive to the idea.

I got diagnosed via a blood test from my doctor, could this be an option for you? I've had symptoms for a long long time but in the UK I was much younger (think ten years ago) so if a teenage girls goes to them with stomach issues and weight loss it's instantly labelled as eating disorder... so I never got tested for anything.

I think it's wholly plausible that joint issues are related to dietary factors. I know my skin has been absolutely terrible the past year in particular, as akaMrsmojo was saying. My skin has been really red and inflamed. A few days in and I can see the redness beginning to reduce and the puffiness of my face start to deflate a little.

Maybe as suggested it's time to start looking for a new allergist or pursue other avenues. I still think it may be worth a GP visit. For interest sake, my GP made me have a full blood count, celiacs test, serology, CRP, all the liver and renal tests etc. Detailed blood work did help as well as fecal specs. It's a pain, but ultimately worth it.

Wishing you the best of luck, feel free to friend me

Heather

origwvgirl

I have talked to my family doctor and although he doesn't know much about it, he said If gluten free made me feel better then by all means do it. He's going to look into the food sensitivity testing (not allergy testing). I've been tested for celiac and wheat allergy and was negative on both. He does a pretty thorough blood work every 6 months to keep an eye on my white cell count, cholesterol, CRP, etc. when we first started testing in 2005, my CRP (the high sensitivity cardiac one) which is supposed to be less than 3 was 23.9!!! That's an inflammation marker for those who aren't familiar with it. It's come down to about 6 or 7 recently.

Surprising my allergist is a young doctor and should be up on this stuff.

akaMrsmojo

Honestly, I do not think the testing is a 100 percent accurate. I think it can miss it many times. I tested negative but my doctor diagnosed me based on my symptoms and the fact I was completely cured without wheat and all gluten. He knew very little about it the disease. The only thing I heard that was 100 percent accurate is the small intestine biopsy. I refused that. Because you have to be actively eating gluten at the time. There was no way I was going back to being sick all the time for them to confirm something I know.

FitnessPalWorks

I asked my doc about testing for Celiac and you know what she said?

(Doc) "You would have to gluten yourself, do you really want to do that?

(Me) "Uh, no."

(Doc) "Exactly. Screw that test...."

Lol I love my doc, she's rad...

mooglysmom

Yeah, the testing is not 100%. Not even close actually.

I had joint pain for years, and was on vicodin regularly it was so bad. Not to mention migraines, dark circles under my eyes, stomach issues, inability to lose weight, and more. I ASKED straight out if I could get tested for Celiac, and was turned down because I wasn't thin. My nausea was so bad that I could barely function, and I was so tired I would fall asleep standing. But there's nothing wrong with me!

Anyway I went gluten free and my symptoms were gone in a few weeks. Imagine that. I saw a GI about a year later when my gallbladder quit working, explained all the symptoms I had had, and she believed that I am Celiac. When they did a scope they tested for it, but you have to be eating gluten, and there's no way I could do that. So it was negative. There really needs to be better awareness about Celiac, and what it can cause.

On a separate note, there needs to be better awareness about how not following the diet if you've been diagnosed can be determental.

Micahroni84

My best friend has is gluten sensitive and she feels the effects of gluten almost entirely in her joints! Sounds like you might need to find a new doctor that has educated themselves fully on celiacs and gluten sensitivity.

Micahroni84

I asked my doc about testing for Celiac and you know what she said?

(Doc) "You would have to gluten yourself, do you really want to do that?

(Me) "Uh, no."

(Doc) "Exactly. Screw that test...."

Lol I love my doc, she's rad...

Sounds like you have a great doctor!

Micahroni84

Yeah, the testing is not 100%. Not even close actually.

I had joint pain for years, and was on vicodin regularly it was so bad. Not to mention migraines, dark circles under my eyes, stomach issues, inability to lose weight, and more. I ASKED straight out if I could get tested for Celiac, and was turned down because I wasn't thin. My nausea was so bad that I could barely function, and I was so tired I would fall asleep standing. But there's nothing wrong with me!

Anyway I went gluten free and my symptoms were gone in a few weeks. Imagine that. I saw a GI about a year later when my gallbladder quit working, explained all the symptoms I had had, and she believed that I am Celiac. When they did a scope they tested for it, but you have to be eating gluten, and there's no way I could do that. So it was negative. There really needs to be better awareness about Celiac, and what it can cause.

On a separate note, there needs to be better awareness about how not following the diet if you've been diagnosed can be determental.

My sister has celiacs and she had to do the blood test 5 times before they got results and ive read that some people have to have their stomach biopsied up to 4-5 times to find the damage that will confirm the diagnosis. I recently read in the magazine Simply Gluten Free, that the test can still come back positive if youve been going GF. Im not sure how, maybe by confirming the damage done to the lining of the stomach. I also read that they do not recommend eating gluten for testing if you have been going GF for a significant amount of time because it can trigger auto immune diseases.

origwvgirl

I definitely think that a new doctor might be in order. What do I look for? Any particular specialty? Would a nutritionist help or do I really need a doctor what can order tests, etc.?

Really, a gluten free magazine?! I'll have to see if I can find it. I have Gluten Free for dummies and Gluten Free Bible cookbooks but haven't figured out how to mesh it into my lifestyle yet. Everything that's not made from scratch seems to have gluten! For now I'm getting more veggies, fruit and protein and avoiding breads and pastas. I am trying to locate alternatives for those in the meantime. MFP really helps because everyone has great suggestions! Thanks!

Micahroni84

I definitely think that a new doctor might be in order. What do I look for? Any particular specialty? Would a nutritionist help or do I really need a doctor what can order tests, etc.?

Really, a gluten free magazine?! I'll have to see if I can find it. I have Gluten Free for dummies and Gluten Free Bible cookbooks but haven't figured out how to mesh it into my lifestyle yet. Everything that's not made from scratch seems to have gluten! For now I'm getting more veggies, fruit and protein and avoiding breads and pastas. I am trying to locate alternatives for those in the meantime. MFP really helps because everyone has great suggestions! Thanks!

You can find Simply Gluten Free at barnes and noble or i found mine at my local organic grocery store. If you can find Udis Gluten Free products, ive found that those tend to taste the best but GF products are higher in fat and calories so watch out for that.

ShoshanahM

When I was figuring out my digestive issues a few years ago, I got sent to one of the two gastroenteroligists in town, who I later discovered was the one with the iffy reputation. First, since my blood test for celiac with my family dr. was negative, the gastro. told me it was IBS caused by stress and gave me a list of foods to avoid that cause gas (beans, potatoes,vegetables, dairy, practically anything with fiber or any nutritional value). I kept having issues, so a couple months later, I just decided to try eating gluten-free, and I started to feel much better. (Besides the times I kept accidentally eating gluten, not knowing it was in certain foods.)

I let the gastroenterologist know I was doing a bit better besides some occasional abdominal pain, and she all but rolled her eyes at me and told me that people with IBS do better on a "low carb" diet. (HUH. Wonder why?). I was eating plenty of potatoes, rice and gluten-free cookies. She told me she could give me a drug to stop spasms in my intestines, which just so happened to be an anti-depressant, and that should relieve my pain.

Now I know that the general public views people who try going gluten-free as trend-chasing, neurotic health nuts, but as I've looked back on this doctor visit a few years ago, I've started feeling more angry about it. I was having diarrhea almost daily and a constant, stretching ache in my gut. I finally experienced some relief with gradually eliminating gluten, and the doctor wanted to give me chemicals that would mess with my brain chemistry?! I've worked hard for the good mental health that I've had the last five years or so, and I refuse to take something for my head to see if it just might calm a gut that clearly just needed a diet that wouldn't irritate it.

Since then, I've learned that for a blood test to be positive, you have to have extensive damage in your intestines, and the test only detects a small percentage of the gluten antibodies that our bodies can produce. I was only about 6 months of GI trouble in when I got tested. A saliva test is being developed that will find all gluten antibodies and can detect them much earlier than a blood test can. The problem is, the medical community is not all up to speed on the research, and people with negative blood tests who felt better w/o gluten are often encouraged to keep eating it. ..Or you get people like the OP's allergist who don't know what even WebMD can tell you about celiac, which is that it is linked to joint pain and arthritis.