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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.

Possible Ingestion Of Gluten?
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8 posts in this topic

Hi everybody, 

 

I am new on this forum and in the gluten free world (It has been 7 months since I started eating gluten free) and it has been going mostly well  :D. But lately, my symptoms have returned and they do not seem to go away. When I stopped eating gluten, I was really depressed and anxious and had been for most of my life. Doctors have prescribed me a lot of different medications including a lot of antidepressants, most of which had close to no effect on me. After a lot of research online, I decided I would give a try to the gluten free diet as a last resort, and, to my surprise, it worked. My depression and anxiety went away for the first time in years, that was a miracle. It lasted until about 2 months ago when the symptoms started coming back. The thing is, I don't know what happened, am I ingesting gluten in one way or another? Have I developed another intolerance and I suffer the consequences of eating said food? I am usually pretty careful about what I eat, but some of it I am not sure (Is it possible that a company change recipe without notice and gluten has been added?).

 

Anyway, sorry for the long rant, I am pretty desperate to retrieve my wellness once again, that is why I am asking for your knowledge. Has anyone else experienced anything similar, like a fairly long relapse in symptoms? If so, have you found the source? How did you find it? 

 

Thank you so much for the help,

 

Musiscience  ;)

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Companies can change their ingredients without notice.  In the Celiac world, you must read every label, every time.  Please keep in mind that Gluten may not be the underlying problem for you since you do not have a diagnosis of Celiac Disease.  I'm not saying it isn't a problem but you should still look at other possibilities.  Many people report improvement of Depression symptoms.  They may wax and wane but still need medication depending on severity and diagnosis.  As far as food intolerances, if you choose to investigate further you should start a food journal. 

 

Good luck to you.

 

Colleen

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It could be either the celiac lingering or a glutening. Like Colleen said, I would check all of you labels just to be sure you are eating gluten.

 

Arthritis was one of my celaic symptoms and I had a pretty severe backslide after I had been gluten-free for a couple of months. Once again, my hair thinned out, I felt flu-ish, and I could barely use scissors or get my arms above my head. I was pretty convinced that I had other problems like lupus or MCTD but the docs said no, it was the celiac. It passed after a few months and I have been mostly arthritis free for about 10 months - a long time for me so I'm hopeful it was caused by celiac disease and that was the last bout of pain for me.

 

So, my point is that it could be celiac disease still, but check labels and look into other causes (like hypothyroidism) in the meantime.  Good luck!

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Thank you for the kind answers.

 

NVSmom, it is really weird that you had that awful weakness for so long on the diet, and that the Doc still pinned it on celiac. I always thought that the diet should take care of the symptoms entirely.

 

It is true that I have not been diagnosed properly, but when I stopped eating gluten it made such a difference (stomach noise, depression, anxiety, fatigue all lifted), I could not believe it. It is to be noted that I was on an SSRI at the time, that was not working, and the depression lifted almost immediately when I stopped gluten. That is why I suspect that I am eating something that mess with my diet to some extent since the symptoms are back. 

 

I think I will double check all my labels from now on and try to eat a lot more raw foods such as fruits and vegetables. Let's wait and see if that make a difference :) . 

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When I first went gluten free, my symptoms resolved when all I did was eliminate my Cheerios and bread.  Then they came back and I had to educate myself about where gluten can be found.  It seemed like I kept getting more and more sensitive to trace gluten and I had to learn more and more about how to avoid it.  This apparent increase in sensitivity seems common from what I have read on forums.  In a way it is a good thing because I was able to know that the gluten free diet works.  It gave me the motivation and determination necessary to really figure out what I had to do.  I do much better with unprocessed foods. 

 

I hope that you feel better soon.

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Good luck!  :) I hope you find the cause and it is just a "glutening". If you can't find a cause, stay gluten-free and give it time - I still had symptoms improving at one year gluten-free.

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Good luck!   :) I hope you find the cause and it is just a "glutening". If you can't find a cause, stay gluten-free and give it time - I still had symptoms improving at one year gluten-free.

Thank you for the kind words :)! As an update to my thread, it was indeed gluten that was causing my symptoms. My symptoms improved when I cut gluten, but I (stupidly I must add...) never thought about changing my non-stick pans, my cutting board and using a different sponge for the dishes. Now I completely changed my kitchen appliances and cleared my kitchen of gluten containing food, since my girlfriend agreed to eat gluten free to help me. Result? I am now back to feeling awesome and my symptoms are gone! Who thought such small traces of gluten could cause such damage in my boding  :o.

 

Thank you so much for your answers! You guys are great  :D!

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Glad you are feeling better! :). It's tricky to find those tiny amounts of gluten!

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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