Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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.

Diagnosed Celiac Despite Negative Bloodwork And No Response To Diet
0

7 posts in this topic

I am not convince I have active Celiac Disease. I'll summarize as briefly as possible. Past 5 years I've been gluten-free because I thought I had Celiac (long story). Decided to start over and get thoroughly tested by a new doctor. Here are the deets:

 

Symptoms: cramping, burning in stomach, gas, distention, random abdominal pains (no diarrhea, no dematitis) 

Never had a nutritional deficiency or anemia, whether eating gluten or not

No improvement of symptoms on gluten-free diet

No relatives diagnosed with Celiac

Celiac bloodwork while Gluten-free: all negative, despite ongoing symptoms  

5-week gluten challenge: biopsies show Marsh 1 elevated epithelial lymphocytes in small intestine and colon

No villous atrophy or structural change.

Repeated celiac bloodwork after 2-month gluten challenge: all very negative again, no change whatsoever

Diagnosis ==> Celiac Disease  :unsure:

 

Is there anything else that could have caused the lymphocytes in my colon and small intestines? 

 

The only things that seem to give me relief are a combination of ginger root, probiotics, vigorous cardio exercise, tons of sleep, and avoiding acidic foods, caffeine and FODMAPs. (That's kind of a lot to keep track of.) Most gluten free baked goods actually make me feel really sick!! I feel much better just eating a regular Dunkin Donut, honestly! Gluten-free is not helping me and it's making my life so complicated. :(  I'm afraid of developing an eating disorder because I have come to view all food as being poisonous because I don't understand what will or won't me sick. Thanks for any help. 

0

Share this post


Link to post
Share on other sites


Ads by Google:

Your gluten challenge may not have been long enough after being gluten-free for so long.   University of Chicago Celiac Disease center recommends 12 weeks for bloodwork, 2 for endoscopy.

http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge

 

Also, there are a few rare things that can cause the lymphocytes and a false positive:

http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease

 

Also, if you are able to post the complete results of your bloodwork including the given reference values, it would be particularly helpful.  If a total serum IgA/IgG was not done, the possibility of a false negative can not be ruled out as some people have low overall numbers.  If you are able to sort these things out and still are stumped, you may want to push to get screened for the other possible causes of damage to the small intestine, such as an immunodeficiency.

0

Share this post


Link to post
Share on other sites

Blood test results BEFORE challenge:

TTG IGA <4 U/mL no antibody detected (my value = 1)

IGA standard range 91-463 (my value = 150)

 

Blood test results AFTER 8-week challenge:

TTG IGA <4  U/mL no antibody detected (my value = 1)

IGA reference range 81-463 mg/dL (my value = 145) 

gliadin deamidated IGA <20 units = none detected (my value = 3)

gliadin deamidated IGG <20 units = none detected (my value = 3

TTG IGG <6 U/mL no antibody detected (my value = 1)

endomysial antibody scr IGA w/ ref to titer (negative)

squamous epithelial cells - none seen

 

I wanted to do a longer gluten challenge but the doctor looked very disapprovingly, as she said 4 weeks would be 95% accurate and at 8 weeks the bloodwork would "definitely show something." This is where Dr. Fasano used to do his research. Key phrase being "used to."

0

Share this post


Link to post
Share on other sites

I am not convince I have active Celiac Disease. I'll summarize as briefly as possible. Past 5 years I've been gluten-free because I thought I had Celiac (long story). Decided to start over and get thoroughly tested by a new doctor. Here are the deets:

 

Symptoms: cramping, burning in stomach, gas, distention, random abdominal pains (no diarrhea, no dematitis) 

Never had a nutritional deficiency or anemia, whether eating gluten or not

No improvement of symptoms on gluten-free diet

No relatives diagnosed with Celiac

Celiac bloodwork while Gluten-free: all negative, despite ongoing symptoms  

5-week gluten challenge: biopsies show Marsh 1 elevated epithelial lymphocytes in small intestine and colon

No villous atrophy or structural change.

Repeated celiac bloodwork after 2-month gluten challenge: all very negative again, no change whatsoever

Diagnosis ==> Celiac Disease  :unsure:

 

Is there anything else that could have caused the lymphocytes in my colon and small intestines? 

 

The only things that seem to give me relief are a combination of ginger root, probiotics, vigorous cardio exercise, tons of sleep, and avoiding acidic foods, caffeine and FODMAPs. (That's kind of a lot to keep track of.) Most gluten free baked goods actually make me feel really sick!! I feel much better just eating a regular Dunkin Donut, honestly! Gluten-free is not helping me and it's making my life so complicated. :(  I'm afraid of developing an eating disorder because I have come to view all food as being poisonous because I don't understand what will or won't me sick. Thanks for any help.

I, too, only showed Marsh 1 and negative bloodwork. My dr called it seronegative celiac. I've been gluten-free for about 10 months and saw a huge improvement. Then felt worse than ever. I've found I am lactose intolerant, sensitive to corn and night shades, spicy, oily, or acidic foods wreak havoc for me and am now suspecting another food : / I'm also getting my thyroid and vitamin levels checked because I'm still having many bad days. Do you think you may be reacting to other foods? Try an elimination diet and track your symptoms. You may find a source to your misery.

I also learned I have a 2 day period before I react, so it made it difficult to pinpoint what was making me sick. The elimination diet helped with this issue.

Cross contamination may be an issue, also. I don't react to small amounts, but the build up of small doses may be bothersome. I found many areas to watch for cross contamination. Maybe this can be a source of your pain?

I sure hope you find your answer and feel better!

0

Share this post


Link to post
Share on other sites

I, too, only showed Marsh 1 and negative bloodwork. My dr called it seronegative celiac. I've been gluten-free for about 10 months and saw a huge improvement. Then felt worse than ever. I've found I am lactose intolerant, sensitive to corn and night shades, spicy, oily, or acidic foods wreak havoc for me and am now suspecting another food : / I'm also getting my thyroid and vitamin levels checked because I'm still having many bad days. Do you think you may be reacting to other foods? Try an elimination diet and track your symptoms. You may find a source to your misery.

I also learned I have a 2 day period before I react, so it made it difficult to pinpoint what was making me sick. The elimination diet helped with this issue.

Cross contamination may be an issue, also. I don't react to small amounts, but the build up of small doses may be bothersome. I found many areas to watch for cross contamination. Maybe this can be a source of your pain?

I sure hope you find your answer and feel better!

Thanks for your reply. It's good to know I'm not the only one diagnosed in this way, because I've scoured the internet and barely found any mention of Marsh 1 being diagnostic in and of itself. I'm also just outside of the standard range for hypothyroidism but not quite enough to get taken seriously. I'm in the "sub-clinical" range. 

 

I recently developed a sensitivity to onion/garlic, which is what led me to find the low FODMAP diet. I bought the IBS book Free at Last and plan on starting an elimination diet this week regardless of whether I have full blown Celiac. The combination of multiple food sensitivities, mild symptoms and probable delayed reactions is making it hard to figure out, indeed! 

0

Share this post


Link to post
Share on other sites




http://www.ncbi.nlm.nih.gov/pubmed/15996156

Here is a link someone shared with me when I asked the same questions. I'm sorry, I don't know how to make the link active, but type it out and read it, it'll answer some of your questions. It helped me.

0

Share this post


Link to post
Share on other sites

Lol, it's active. I'm still learning this site..

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
      103,337
    • Total Posts
      917,377
  • Topics

  • Posts

    • 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
      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
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,470
    • Most Online
      1,763

    Newest Member
    Kiwiana
    Joined