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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

"severity" Of Dh/celiac?
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8 posts in this topic

Hello!

 

I have been on and off these boards for years, because I keep coming back to having signs that point to Celiac.  It all started 10 years ago, I had just weaned my daughter and hormones resuming their cycle.  I woke up one morning feeling like I had a stomach virus and struggled for the next 2 years with intense nausea, fatigue, anxiety, insomnia. 

 

I lost 15 pounds and then gained more.  I'd not eat for days, then eat again because the nausea went away, start again with the nausea and repeat.  I gained weight.  My husband and I decided to do "South Beach" and for the first time in YEARS I felt good.  A gluten connection was suspected, but my doctor had written me off as a nutty basketcase. 

 

I pressed him to do an endoscope, but was ill-informed and had eliminated a lot of gluten products.  It came back negative and he told me I do not have Celiac disease, that I was depressed (YOU THINK?). 

 

I know the obvious answer would have been to eliminate gluten but to be honest, I couldn't do it.  Without a "confirmed" diagnosis, people just thought I was crazy, and the effort collided with my family life.  So I learned to walk the line - I knew my major triggers (condensed soups, seasoned and packaged things, processed meats) so I avoided THOSE.  For the past year I have been avoiding processed stuff, but not necessarily eliminating gluten-containing foods and I feel fairly good.

 

However, I have episodes when I eat poorly for repeated days in a row - mostly holidays and such with repeated meals that I don't prepare - where I get what I have always termed "hives".  They are nearly always on my feet or lower legs, and they tingle/burn like fire ants but itch like MAD.  Worse than black fly bites at their worst.  I won't get loads of them - a cluster or two on the arch of my foot, between my toes, on my ankles, sometimes my hands.  They welt up like hard pimples and then I scratch them to scabs. 

 

I have finally come back here to look for pics of DH and caught something about MSG and salicylates, and this makes a little sense.  For the past year I've known that bread alone isn't that bad of a trigger, but if I have something with what I term "chemicals" in it, I am in big trouble. 

 

So can someone please tell me if it makes sense that I would be able to eat some gluten here and there and be OK, but if I have gluten PLUS chemical-laden food that it would trigger a DH outbreak?  To be honest, I know mentally I would eat very well if I had a confirmed diagnosis, and that would be accepted. 

 

For 10 years I've been considered the wacky one in the family that chooses not to eat certain foods when there's nothing "really wrong" with me.  If I knew it was likely, I'd schedule an appointment with a dermatologist and load up on the foods I know would cause this a week before and walk in and ask for a biopsy.  I've never deliberately tried to set this off, but I think I could.

 

Suggestions and comments welcome.

 

 

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Oh boy.  I think I answered my own question.   I looked up foods high in iodine after reading a bit more here. 

 

First off I had an omelet Thursday night.  Then Friday night I had Sushi.  What is #1 on the list I read?  Seaweed!

 

Am I on the right track?  Would it show up that fast?  I dnol't have oozing blisters (that I have noticed)

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Hi Krystal, just the description of what happens sounded exactly like how my DH started and felt. And I'm not sure about the combination of gluten+msg etc, but it is worth remembering that those of us with DH don't often get the severity of illness from the gut suddenly after ingesting gluten. Mine is definitely a gradual build up. Some people can tell straight away,even with DH. I cannot. So it could just be a function of the build up process...also if you are really serious about doing the gluten challenge, you'll need to have some good 'active lesions' and make sure your derm biopsies from beside the lesion, not the lesion itself (my derm did both!) And I totally hear you about having a confirmed diagnosis for your own mental strength. it was extremely validating for me. Lots of people do fine without it, though. Let us know how you get on.

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krystal:

 

Why are you thinking there is a connection to iodine?

 

I think it would be wise to see a good nutritionist, naturopath, or doctor who knows a lot about these kinds of things (hard to find) about your symptoms because it really could be a number of things. It's very possible you have sensitivities to foods or substances other than gluten, or in addition to gluten. Good luck <3

 

In the meantime you could start keeping a detailed journal about what you eat and your symptoms.

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krystal:

 

Why are you thinking there is a connection to iodine?

 

I think it would be wise to see a good nutritionist, naturopath, or doctor who knows a lot about these kinds of things (hard to find) about your symptoms because it really could be a number of things. It's very possible you have sensitivities to foods or substances other than gluten, or in addition to gluten. Good luck <3

 

In the meantime you could start keeping a detailed journal about what you eat and your symptoms.

Iodine often makes DH worse.

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Iodine often makes DH worse.

true dat.  fish and shellfish used to make me flare up - also ibuprofen but i can't remember why...

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krystal, Yes, iodine is key. And IMHO you should certainly be actively seeking a dx. This means loading up on gluten & possibly iodine too so you get a nice (did I say nice?) good (did I say good?) outbreak. I can't even believe I'm urging someone to deliberately head for hell as fast as they can!!!! :o But If it were me, wanting an official dx as badly as you have expressed, then I would load up for not 1 week but 3 or 4 weeks. And remember, only 40% of us with dh test positive on the blood work so you need to find a derm who is skilled & knowledgeable in doing biopsies of dh. If you're going to do this thing then don't go into it halfway ~~~~ go for broke & IMHO that is NO LESS then 4 weeks of gluten loading. 

No, you don't have blisters YET. But they are actually there, underneath the skin, laying in wait & ready to go off like bombs. That will be your biggest problem with a derm ---- convincing them to do a dh biopsy when you don't present with obvious blisters.

 

Good luck & let us know what happens. And we will be here for any questions, rants, or pity parties. I don't think there's a one of us who hasn't done all 3 & more than once.

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Iodine often makes DH worse.

Oh I see, thanks, I didn't understand what she meant, thought she was saying she now thought she had an iodine allergy and not a gluten allergy.

 

. . . . .

 

I agree with squirmingitch in that if you want a proper diagnosis (or to rule out Celiac) that you're going to have to load up on gluten unfortunately. 

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
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    • Confused
      I have not. I'll talk to my doctor about it
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