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

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
      104,113
    • Total Posts
      919,442
  • Topics

  • Posts

    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,151
    • Most Online
      1,763

    Newest Member
    Ayryil
    Joined