Diagnosed Celiac Despite Negative Bloodwork And No Response To Diet

[Cboogy]

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 

 

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. 

[LauraTX]

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.

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

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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.

[Cboogy]

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."

[CajunChic]

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 

 

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!

[Cboogy]

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! 

[CajunChic]

Open Original Shared Link

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.

[CajunChic]

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