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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.

Symptoms And Cfs
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4 posts in this topic

HI everyone,

I joined here some time ago as I was concerned about symptoms that I thought may have been related to celiac disease ...I had a blood test and endoscopy which both resulted in negative results so I resigned myself that it just the symptoms of CFS and fibromyalgia which I wa diagnosed with 8 years ago.

I never seem to get to the bottom of my stomach problems with one thing or another but it's starting to really get me down and I could do with some advice if you don't mind. I seem to struggle with certain food and what I think are reactions to them, but I get overwhelmed with how tired I am even tho I know indeed to start eliminating food,I started paleo last week and get the dreaded carb flu which knoecked me out so I felt like I couldn't carry on with it, my main problems are...

Tomatoes vinegar mayonnaise salad cream, and chocolate, I get excess saliva straight away and a bit wheezy and a racing heart. I get very tired too.

Bananas give me a bloated stomach straight away and bread burns my mouth and really bad gas, sorry tmi.

I also suffer from acid reflux and although I take omperprazoledaily I stil wake up choking on sick some nights and I have constant hoarse voice, nose sores that won't go away,mild psoriasis too.

The worst problem right now tho is constant itching which is driving me mad and a weak bladder, I just feel very inflamed if that makes sense, I have a double appt with my gp next week an will discuss this with him, but wanted to see. If anyone had any advice in the meantime, or what questions I should ask him, thanks so much for reading this long post I appreciate it very much.

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You mention these foods (tomatoes, vinegar, mayo, chocolate) and they are high in histamine. I have had trouble with them myself, causing many symptoms as you describe.  Perhaps you should be tested for allergies?

 

Pre-diagnosis, gluten/Celiac gave me itching and bladder problems. Off gluten, I have none of those symptoms. 

 

Celiac is not an allergy, of course, but you could also be gluten intolerant.  I have met many people who have felt so much better off gluten and their "fibro" and CFS--has disappeared. I know you tested negative for celiac, but there is no harm in trying a gluten-free diet to see if you feel better. Give it a few months. It can't hurt and it may help. 

 

Just a suggestion :) .

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Thanks so much for your advice, I will mention the histamine allergy to the doc and will give the gluten free diet a try again, its very hard to Implement anything when I'm so tired all the time, I've bought a diary too to keep a log of what I'm eating and any problems

Thanks again for your help

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I had the same response. The paleo approach did not work for me at all.

The increase in certain veggies and fruits raised the histamine levels in my body so high

and created symptoms that feel like glutenings (shortness of breath, hair loss, fatigue, itching, skin burning and prickling, insomnia, racing heart, bowel issues). I have no thyroid disease or any other AI problems any more ( besides osteoarthritis) except wicked joint and muscle pain  and this, too can be related to the raised histamine levels . I was given a "fibro label" years ago--much like dozens of others on this site-- and that is often a misdiagnosis for celiac and gluten intolerance.

 

 I read up on histamine intolerance. I am not the only member on here with this problem and we have compared notes.  :) She also has a problem with heat intolerance. (anything is possible, it seems, when the body has been ravaged by long undiagnosed celiac) 

 

This is not going to show up on classic skin-prick IgE-mediated allergy testing. 

It is an intolerance to too much histamine circulating in the body because histamine is broken down in the gut by 2 enzymes--the key one

is diamine oxidase (DAO) and amino acids. If you are deficient in those because of malabsorption caused by celiac (or some other gut impairment).you may have a problem
with foods high in histamine. (alcohol (darn it!) tinned fish, shellfish, spinach, tomatoes, avocado, cheese,  strawberries, chocolate, mushrooms, vinegar, soy etc) 

 

No allergy doc will be aware of this (the ones in Europe are, but they are way ahead of the pack) but a savvy GI doc will be--mine is! :) . All I know is, I took those foods back out and I am starting to feel so much better again after mysteriously going downhill back in January. 

 

If you do an elimination diet, try taking out gluten and dairy first for 2 weeks, if you see a difference, good---keep going. 

I used the failsafe diet when I was first diagnosed and very ill from celiac and it helped immensely.

 

Just remember that FMS and CFS are "syndromes"--like IBS--and they are a collection of symptoms that

sound an awful lot like celiac/gluten intolerance. Many of us on here are skeptical of those diagnoses because we heard them too (before DX) and we know how those symptoms can resolve off gluten.  I was barely able to walk the length of my driveway or tie my own shoes  without gasping for breath 2 years ago. I was dying a slow death. 

 

Take probiotics, trial the gluten-free/DF diet for several months and with time, you may start to feel better.

 

This is not medical advice, okay. I am merely speaking from experience (and watching so many people, especially a close friend with CFS and FMS, etc. improve drastically off gluten) Good luck, hon!

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    • 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
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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