• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 Testing
0

4 posts in this topic

Apologies in advance for the long-windedness of this post!...

 

Last year I suddenly started experiencing awful gastric problems - severe bloating, horrific gas with eye watering smells (sorry to be so graphic) and bowel movements that were not normal. I thought I might have IBS so self-treated with various over the counter remedies and alterations to my diet, but nothing made a difference, so eventually went to my doctor for help.

 

An initial diagnosis of IBS failed to respond to drugs so a series of blood tests were done, including the one for coeliac, which came back negative. At the time I was severely limiting my intake of bread, cereal etc. as I wondered if that might be that I had picked up an intolerance (as I exercise a lot and fill up on toast and cereal in between meals). I am not sure if stopping all of this could have affected the test?

 

After a series of negative test results, I was back to a diagnosis of IBS. Four different drugs later and no response to any of them and I asked for a referral to a gastroenterologist. A variety of tests including an endoscopy and biopsies. The biopsies were lost and my consultant said not to worry as I 'probably didn't have celiac disease anyway'.

 

Bounced back to my doctor who yet again stuck the IBS label on me and prescribed variations on a theme of drugs I'd had before, which yet again I have not responded to.

 

My symptoms are so similar to many of those described with coeliac that I decided to try an elimination diet to see if that made a difference. Didn't notice too much of a change after two weeks, so returned to normal eating and went to town on toast, pizza, cereal, all the things I'd missed! But oh holy goodness did I pay the price. Was in so much pain with the bloat and gas.

 

So my question is should I request another endoscopy to rule in/out celiac (even though it's a singularly unpleasant procedure!) or does the fact that I wasn't massively better after two weeks an indication that it is not coeliac?

 

Thanks in advance to anyone who can help!

 

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


At two weeks into the gluten-free diet, only my stomach aches and bloating were improved. My migraines were actually worse, hairloss was still bad, no change to fatigue, leg cramps still happened, joint pain was still bad. At 3 months gluten-free, overall I still felt pretty bad.... It took well over 6 months for some of my symptoms to start improving, and I'm still waiting for other symptoms to start getting better. It can take a long, long time to get better. I'm afraid that a two gluten-free trial is nothing.  :(  You would need to commit to the gluten-free diet for at least 3 months, more is better, before assessing how eating gluten-free has affected you.

 

Have you had all celiac tests done? DGP, AGA, and tTG (both IgA and IgG versions); EMA IgA, and total serum IgA (control test)? Not all tests work for each person, a variety of tests is the best way to detect celiac disease.  This report (pages 11-12) discusses the tests and how good they are: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

So, no one has a copy of the bipsies? Not the hospital or anything? That's pretty poor management on their part.  :(  It's up to you if you wish to do it again.  You'll have to pursue whatever path will benefit you the most.  

 
Good luck with whatever you decide to do. If you decide to do more testing, don't start the gluten-free diet until testing is complete or it could affect your results.
0

Share this post


Link to post
Share on other sites

two weeks isn't a very long time - also, how long have you been sick?  if your intestines are damaged it will take a while for them to heal.  wow -- they lost your biopsies....  good thing they weren't testing for ANYTHING IMPORTANT - sheesh....

 

your experience with your doctors sounds like mine:  IBS <the elusive and mysterious 'catch-all' diagnosis, they gave me a ton of pills over the years, which, if they worked i have no idea because most of the time the side effect was 'drowsiness' - i didn't have any time for that, i worked full time and was raising 4 kids (husband on the road most of the time) by myself!  so, ow, i just suffered through it.  lolz if i want to remember anything about their childhood, i have to ask them (j/k but sometimes it feels that way!)  good luck :)

0

Share this post


Link to post
Share on other sites

Thank you for your replies.  I have been unwell now for approaching 15 months.  The diet I did wasn't specifically gluten-free, it was an elimination diet to see if I had an intolerance of any description.  The first two weeks was very stringent and the guidance said that if you didn't see any change in symptoms after the initial two weeks (after which you start reintroducing food groups) then there was little chance of a food intolerance and you should return to normal eating.  Which is what I did, with horrible consequences!

 

I've looked at all those tests but am not sure what I had!  I just know I had a blood test and it came back negative.  Then I had an endoscopy.  The biopsy samples were not labelled up properly by the consultant doing my procedure, so they were destroyed by the laboratory without being analysed :(

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,460
    • Total Posts
      930,678
  • Member Statistics

    • Total Members
      63,884
    • Most Online
      3,093

    Newest Member
    Mato Sapa
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
  • Upcoming Events