Celiac Disease

shannonc1115

Hello,
Last week I finally went to the dermatologist for a rash I have had on my back for over a year. Before I get pummeled, I know I should have gone sooner, I guess I just kept hoping it would go away on its own, instead it kept getting worse.
I had cut out the 'normal' gluten items (ie - bread, pasta, pizza) and it got a little better, but did not go away all together. The doctor told me that is was dermatitis herpetiformis, which is the skin form of celiac disease. I have to get in to a gastroenterologist to get tested for internal CD, but have to make sure I eat gluten for a good 6 weeks before the test to make sure it is in full bloom when I go to get tested to make sure if I get a negative, it's not a false negative. The reason this is important is that if I just have a sensitivity, I can have cheat days, but if it is full CD (like they suspect) I will have to be very careful to not have ANY gluten in my diet.
Here is my question - if anyone on here has CD or a gluten sensitivity, are there any foods that contain gluten that you eat that make you less nauseous? I have to I just had one portion of pasta for lunch and I feel extremely nauseous and bloated...not sure I can do this for the whole 6 weeks

Treece68

Nope sorry you will have to suffer through it. Diagnosed 1year and 8 months ago. I feel great now that I know. Good luck!

cbohling1987

This is not my personal experience, but rather secondhand information from my wife who has CD (I don't). Before she cut gluten out entirely she found that sweet foods like pastries/cakes were less likely to upset her stomach compared to, say, sandwich bread or pasta.

I realize that eating pastries while attempting to hit goals w/r/t calories and macros isn't exactly simple, lol

klenz525

I have celiac. I do not eat anything with gluten in it (and an accidental exposure causes a full day of sickness with a few more days of not feeling right). Even if you find a food that contains gluten and doesn't give you physical symptoms, when you ingest gluten your body literally attacks and damages the microvilli of your small intestines. Over time, this can lead to poor absorption and malnutrition. There's no such thing as cheat days when you have celiac disease

Let me know if/when you're diagnosed if you have any questions!

ritzvin

shannonc1115 wrote: »

Hello,
Last week I finally went to the dermatologist for a rash I have had on my back for over a year. Before I get pummeled, I know I should have gone sooner, I guess I just kept hoping it would go away on its own, instead it kept getting worse.
I had cut out the 'normal' gluten items (ie - bread, pasta, pizza) and it got a little better, but did not go away all together. The doctor told me that is was dermatitis herpetiformis, which is the skin form of celiac disease. I have to get in to a gastroenterologist to get tested for internal CD, but have to make sure I eat gluten for a good 6 weeks before the test to make sure it is in full bloom when I go to get tested to make sure if I get a negative, it's not a false negative. The reason this is important is that if I just have a sensitivity, I can have cheat days, but if it is full CD (like they suspect) I will have to be very careful to not have ANY gluten in my diet.
Here is my question - if anyone on here has CD or a gluten sensitivity, are there any foods that contain gluten that you eat that make you less nauseous? I have to I just had one portion of pasta for lunch and I feel extremely nauseous and bloated...not sure I can do this for the whole 6 weeks

For me, pizza and bagels are the worst. I can get away with almost anything else w/out extreme stomach discomfort, but more than 1/2 a bagel or 1 slice of pizza and ouch. I think they use a higher gluten dough for these to get the extra chewy consistency. Many of the best breads too. Light fluffy stuff (like the aforementioned cakes and pastries) were much better for me as long as I didn't overdo them. pretty much: dense, chewy consistency -> pain.

fitoverfortymom

If you have been officially been confirmed as having dermatitis herpetiformis, then you shouldn't need any additional blood or biopsy testing for Celiac. My daughter has Celiac and seeing her suffer daily with little to no understanding of what was troubling for her (this was when she was a little kid, she's now 20). I can't imagine what a Celiac must feel trying to handle gluten for 6 weeks to ensure a positive test.

Are you having the blood test or a biopsy of your small intestine, also? Did the doctor confirm that the rash was indeed DH, or is it just suspected. The reason I ask is if the rash has been confirmed as DH, then it's confirmed that you have Celiac.

Rice Krispies has malt/barley syrup. Maybe try that? Most Kellogg's cereals use malt/barley. I can't imagine intentionally poisoning yourself. Maybe eat cross-contaminated foods from a shared fryer at restaurants (like french fries). The fries don't have gluten, but use shared oil which will bugger them up with a bit of gluten.

Honestly, it sounds like you REALLY do have Celiac and I would take the approach of getting the blood test ASAP. If for some reason it comes back false/negative, THEN do the gluten challenge for a few weeks.

Best of luck to you with your diagnosis and further treatment.

anglyn1

fitoverfortymom wrote: »

If you have been officially been confirmed as having dermatitis herpetiformis, then you shouldn't need any additional blood or biopsy testing for Celiac. My daughter has Celiac and seeing her suffer daily with little to no understanding of what was troubling for her (this was when she was a little kid, she's now 20). I can't imagine what a Celiac must feel trying to handle gluten for 6 weeks to ensure a positive test.

Are you having the blood test or a biopsy of your small intestine, also? Did the doctor confirm that the rash was indeed DH, or is it just suspected. The reason I ask is if the rash has been confirmed as DH, then it's confirmed that you have Celiac.

Rice Krispies has malt/barley syrup. Maybe try that? Most Kellogg's cereals use malt/barley. I can't imagine intentionally poisoning yourself. Maybe eat cross-contaminated foods from a shared fryer at restaurants (like french fries). The fries don't have gluten, but use shared oil which will bugger them up with a bit of gluten.

Honestly, it sounds like you REALLY do have Celiac and I would take the approach of getting the blood test ASAP. If for some reason it comes back false/negative, THEN do the gluten challenge for a few weeks.

Best of luck to you with your diagnosis and further treatment.

This is was my understanding as well...that confirmed DH was always Celiac and no need for further testing! Good luck to you! I've been diagnosed and gluten free for 8 years. I'm not sure what to advise you to eat because the things that cause less of a reaction usually have less gluten or it's fermented so it's slightly easier to digest and I'm not sure how that will work out for you on the testing.

olive1968

That plan would destroy my daughter who has Celiac disease. I'm going to ask you the same questions as others; are you having the blood work?

Coincidentally, my daughter just texted me to ask if I was sure what we had yesterday was gf as she feels lightly fluish, a headache is coming on and her vision just went wonky (this is how her Celiac presents, more neurological).

Keto_N_Iron

I was diagnosed via biopsy in 2013. i had the blood test done on all my children before going in and doing the biopsy. only one came back positive but i have the blood test done every few years to be safe.

I can't even imagine eating anything with gluten in at all anymore. but what i would suggest is staying away from vast quantities. maybe keep it to like a piece of bread a day or something. you can get a false negative if you don't eat any before the test and you do want to know for sure. I've spoken with multiple drs. because i move a lot and always have a GI doc on hand just incase i have questions. from what i have been told (run it by your doctor, i am not one) even a small amount of gluten can cause a reaction.

As your doctor if there is an amount he/she would recommend. is just one piece of bread a day sufficient? rather than a meal (such as pasta) that is primarily gluten based.

fitoverfortymom

olive1968 wrote: »

That plan would destroy my daughter who has Celiac disease. I'm going to ask you the same questions as others; are you having the blood work?

Coincidentally, my daughter just texted me to ask if I was sure what we had yesterday was gf as she feels lightly fluish, a headache is coming on and her vision just went wonky (this is how her Celiac presents, more neurological).

My daughter is 20 and had to start managing her diet completely on her own when she went to college across the country. Sadly, I don't think she is as diligent about it as we were when she lived at home. My daughter will throw up within an hour or two of legit exposure, get a migraine-type headache for a day, and then brain fog for days > weeks. Her skin flares up, too. When she was home for Thanksgiving, I noticed a terrible bout of DH on her elbows and knees. Cross contamination exposure is what she gets most which is what jacks with her skin.

cbohling1987

olive1968 wrote: »

That plan would destroy my daughter who has Celiac disease. I'm going to ask you the same questions as others; are you having the blood work?

Coincidentally, my daughter just texted me to ask if I was sure what we had yesterday was gf as she feels lightly fluish, a headache is coming on and her vision just went wonky (this is how her Celiac presents, more neurological).

Yeah, my wife never actually got the test for Celiac, but it's very obvious that she has a major gluten sensitivity since she gets sick and throws up if she eats any food containing gluten.

So I realize it might not be scientifically "accurate" to claim she has CD, but for the purposes of diet it just makes sense to assume that she does.

So I'm a bit mixed about whether the OP should go through with the test. I mean if you get really sick after eating anything with wheat, barley, or rye in it, you probably have a pretty good idea already. I'll admit to not being a doctor, though.

fitoverfortymom

cbohling1987 wrote: »

olive1968 wrote: »

That plan would destroy my daughter who has Celiac disease. I'm going to ask you the same questions as others; are you having the blood work?

Coincidentally, my daughter just texted me to ask if I was sure what we had yesterday was gf as she feels lightly fluish, a headache is coming on and her vision just went wonky (this is how her Celiac presents, more neurological).

Yeah, my wife never actually got the test for Celiac, but it's very obvious that she has a major gluten sensitivity since she gets sick and throws up if she eats any food containing gluten.

So I realize it might not be scientifically "accurate" to claim she has CD, but for the purposes of diet it just makes sense to assume that she does.

So I'm a bit mixed about whether the OP should go through with the test. I mean if you get really sick after eating anything with wheat, barley, or rye in it, you probably have a pretty good idea already. I'll admit to not being a doctor, though.

I agree. Unless you forsee a future need to have her condition medically documented, let the poor gal "trust her gut."

fittocycle

I'm gluten intolerant. I haven't eaten gluten in almost 7 years. For me, I end up with migraines and stomach upset/bloating when I eat it. I did slip up last weekend and had a taco with a flour tortilla. No ill effects from it which surprised me

RodaRose

You already have a diagnosis. Why do you need the diagnosis again?

mph323

shannonc1115 wrote: »

Hello,
Last week I finally went to the dermatologist for a rash I have had on my back for over a year. Before I get pummeled, I know I should have gone sooner, I guess I just kept hoping it would go away on its own, instead it kept getting worse.
I had cut out the 'normal' gluten items (ie - bread, pasta, pizza) and it got a little better, but did not go away all together. The doctor told me that is was dermatitis herpetiformis, which is the skin form of celiac disease. I have to get in to a gastroenterologist to get tested for internal CD, but have to make sure I eat gluten for a good 6 weeks before the test to make sure it is in full bloom when I go to get tested to make sure if I get a negative, it's not a false negative. The reason this is important is that if I just have a sensitivity, I can have cheat days, but if it is full CD (like they suspect) I will have to be very careful to not have ANY gluten in my diet.
Here is my question - if anyone on here has CD or a gluten sensitivity, are there any foods that contain gluten that you eat that make you less nauseous? I have to I just had one portion of pasta for lunch and I feel extremely nauseous and bloated...not sure I can do this for the whole 6 weeks

You've officially been diagnosed with celiac disease. Some people with celiac are more or less sensitive to gluten contamination, but there's no such thing as "cheat days" with CD, if it gets into your small intestine you will be doing damage whether you have symptoms or not. I get really hoping that it's non-celiac sensitivity and that maybe you don't fall into the very sensitive category and can have occasional treats, but from your information, that bridge has already been crossed.

Celiac disease has many different symptoms and may affect each person differently, but whether you experience symptoms every time you eat gluten or only sometimes, your small intestine is always affected.

nvmomketo

I If you have the DH rash you can get that tested. You'll need to have a biopsy done BESIDE the active rash. Positive= celiac

The endoscopic biopsy and blood tests have a higher false negative result in those with DH. Even so, the tests you probably want are tissue transglutaminase IgA and IgG, deaminated gliadin peptides IgA and IgG, endomysial IgA antibodies, and possibly the anti-gliadin IgA and IgG antibodies (although that test is dated and less reliable. Most blood tests need an equivalent of 1-2 slices of bread a day for 2-3 months. The endoscopic biopsy only needs a 2-4 week gluten challenge.

Good luck. I am afraid I have no advice on gluten products that are fine on the stomach - I never had nausea as a symptom.

sofchak

From personal experience as someone with gluten sensitivity, I can say the more glutenous the flour, the worse my symptoms are - enriched wheat flour (stomach upset) > durum flour (full blown food poisoning symptoms).

Otherwise, look to wheat as a second or third ingredient on a product rather than the first. That could mitigate.

Lastly, depending on how much gluten you need to consume, many pre-packaged seasoning packets (Mccormick’s taco seasoning for example) have gluten. If you only need to have a little gluten in your system, that could be a good idea.

shaumom

1. No one but celiacs get the DH rash. That is the only thing that causes it. As has been said, if there is a biopsy of the skin proving DH, that IS a positive celiac diagnosis. And as has also been said, research has shown that those with the DH rash have a much higher rate of false negative for the blood test, which is why the skin biopsy is so important.
2. The biopsy for the DH rash is different than for a regular rash- the place to take the biopsy is unique for this type of rash. If your dermatologist is ignorant enough not to realize the biopsy alone is a diagnosis, I would be very cautious about getting that particular doctor to do the biopsy- I know a lot of folks who had it done wrong and had to have it redone.

The nice thing about the rash- usually, you can eat gluten for a few days only and trigger the rash enough for the skin biopsy, vs the weeks of damage from eating gluten you would need to try and get the celiac blood testing, you know?

Truly, the skin biopsy is SO much easier and less damaging for you.

shannonc1115

Thank you everyone so much - I'm sorry I haven't responded sooner, I didn't think I was getting any responses because my notifications weren't set, I really appreciate all of the feedback.

The rash on my back was "most likely" DH, but I was told to go to a gastro to get the blood test to make sure. Not sure why a biopsy was not done? When I talked to the gastro office they wanted me to do the 6 weeks eating gluten. I feel so nauseous every day and cramp up so bad I can't get anything done. I think I'm starting to get a bit depressed. My joints are sore again and I can't grip weights well at the gym. I didn't know that I could just get the biopsy on my back for the result...I think I will go that route. No way I can keep doing this.

Thank you so much everyone!

mph323

shannonc1115 wrote: »

Thank you everyone so much - I'm sorry I haven't responded sooner, I didn't think I was getting any responses because my notifications weren't set, I really appreciate all of the feedback.

The rash on my back was "most likely" DH, but I was told to go to a gastro to get the blood test to make sure. Not sure why a biopsy was not done? When I talked to the gastro office they wanted me to do the 6 weeks eating gluten. I feel so nauseous every day and cramp up so bad I can't get anything done. I think I'm starting to get a bit depressed. My joints are sore again and I can't grip weights well at the gym. I didn't know that I could just get the biopsy on my back for the result...I think I will go that route. No way I can keep doing this.

Thank you so much everyone!

The symptoms you're describing are consistent with celiac disease. I'm so sorry you're having such a hard time getting this diagnosed so you can just go ahead and eliminate the gluten. If the blood test comes out negative and you are still having symptoms (there's a high rate of false negative) I would join posters above in urging you to push for a biopsy before cutting out gluten again. Hope this get resolved soon.

fitoverfortymom

You sound like such a textbook case, I'd stop eating that gluten and start healing your gut!

ETA: Here is a helpful page about DH and the biopsy and diagnosis: https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/. Maybe your dermatologist hasn't diagnosed Celiac before via skin biopsy and that's why they quickly referred you to gastro. If you can find a dermatologist to do this skin biopsy, it might save you some hassle (also it might be a hassle finding a dermatologist that is near you and has done this test before).

I hope you get to feeling better soon.