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Test Results Negative, Disappointed

enoughalready

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enoughalready Newbie
enoughalready
Posted

My blood tests came back negative for celiac, and I have to be honest that I am disappointed. I really thought that I had celiac and I wanted to be able to go gluten free and have at least some of my symptoms go away. I just wanted an answer and to have a solution. I have always had a sensitive stomach since I was young, either diarrhea or constipation. My bms have never been really normal. It's embarassing but they always smell really really bad. I also have been dx with fibromyalgia, pcos, anemia, restless leg syndrome, edema, cluster headaches, and migraines. I'm 28 and I've left jobs, dropped out of school, missed social engagements and I just want to feel better to live a more normal life. I'm obese so my doctor was hesistant to test for celiac. When I eat high protein, very low carb, I usually feel better and have more energy, but I've never been able to stick to Atkins or South Beach. My gastroenterologist specializes in IBS (which I have been dx with) and he seems to think that's what I have. I feel like all of these things put together are related in some way but he thinks they are all separate.

I am having a colonoscopy and upper GI endoscopy next week. For the past 4 weeks I've had diarrhea every day several times a day. Prescription anti-diarrhea medicines aren't working and the anti-spasmotic gives me horrible stomach cramps. Blood tests and stool sample came back negative for parasites, e coli, salmonella, etc.

Could this be all individual problems or do you think they would have to be connected somehow? My doctor is very hesistant to believe that it is celiac, especially after the negative blood test results and the fact that I am obese, but I don't know since I feel better when I cut out carbs, even though it's hard to stick to.

I'd appreciate your thoughts or advice.

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GottaSki Mentor
GottaSki
Posted

Do not dismiss Celiac Disease of Non-Celiac Gluten Intolerance just yet.

First, keep eating gluten until the day of your endoscopy.

Second, once your endo is complete remove ALL gluten for a period of three months (six is better) to monitor symptom improvement. You need not wait for biopsy results. Elimination is the only test for Non-Celiac Gluten Intolerance - NCGI presents with many of the same symptoms as Celiac Disease.

Third, being overweight is very possible with Celiac Disease. Many of us had unexplained weight gain for much of our lives. The "classic" description of a person with celiac being underweight, short in stature and usually presenting in childhood is simply inaccurate. We come in all shapes, sizes and ages.

Good luck with your endo...take this week to learn all you can about removing gluten from your diet. The transition can be very tough - read, ask questions and it will go a bit more smoothly.

Edit: Forgot to add - Make sure your doctor ordered Total IgA along with IgG celiac tests. Not everyone tests IgA positive.

enoughalready Newbie
enoughalready
Posted
  • Author

Thanks for your advice. I will stay on a gluten diet until the endoscopy. My dr tested only for IgA and tTG. I'll have to ask him about that. He specializes in IBS and he keeps telling me that's what I have, but with everything else, it seems like it's more than just IBS.

I will definitely look up going gluten free this week for after the endoscopy. Thanks :)

Do not dismiss Celiac Disease of Non-Celiac Gluten Intolerance just yet.

First, keep eating gluten until the day of your endoscopy.

Second, once your endo is complete remove ALL gluten for a period of three months (six is better) to monitor symptom improvement. You need not wait for biopsy results. Elimination is the only test for Non-Celiac Gluten Intolerance - NCGI presents with many of the same symptoms as Celiac Disease.

Third, being overweight is very possible with Celiac Disease. Many of us had unexplained weight gain for much of our lives. The "classic" description of a person with celiac being underweight, short in stature and usually presenting in childhood is simply inaccurate. We come in all shapes, sizes and ages.

Good luck with your endo...take this week to learn all you can about removing gluten from your diet. The transition can be very tough - read, ask questions and it will go a bit more smoothly.

Edit: Forgot to add - Make sure your doctor ordered Total IgA along with IgG celiac tests. Not everyone tests IgA positive.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Your symptoms sound really similar to mine. I am overweight too. I too have been better on Atkins but fallen off.

I was really disappointed when my blood test was negative. I am waiting for biopsy results now. I think it will probably be negative as I couldn't handle a gluten challenge

GottaSki has great advice there.

Just wanted to say I have been gluten-free 6 weeks now and am starting to feel much better.

Come on in, and ask lots of questions. These folks are great.

nvsmom Community Regular
nvsmom
Posted

How frustrating for you! :(

Lisa gave you good advice. Continue with the gluten until your upper endoscopy is done. Check that 6 or more samples will be taken; I've heard many people say that more is usually better because the damage is patchy and not uniform.... you don't want the doctor to miss a damaged spot because they went too quickly.

You could very well be non-celiac gluten intolerant if not a celiac. I believe there are twice as many sufferers of that than celiac... that's a lot of gluten-free people. I hope you will go on the gluten-free diet when your testing is done; NCGI people may not have the intestinal damage, but they feel just as badly as the celiacs do.... if not worse in many cases.

Good luck. :)

GottaSki Mentor
GottaSki
Posted

My dr tested only for IgA and tTG. I'll have to ask him about that. He specializes in IBS and he keeps telling me that's what I have, but with everything else, it seems like it's more than just IBS.

Sadly, this is quite common. Many doctors (even Gastroenterologists) lack specific training and experience with regard to Celiac Disease and NCGI. Trust your gut and keep looking for answers.

Here is the Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Other members have posted that their docs suggested the addition of:

A, Calcium, Magnesium and Potassium

Ask your doctor how many biopsies he'll be taking of the small intestine specifically for celiac biopsy. Many doctors will take only one or two and sometimes will not biopsy at all if they don't "see" damage. The changes in celiac are microscopic until the damage is more severe - so biopsy is not optional. There should at least six of the small intestine.

Here is a link to a paper that someone else posted - read it and take a copy along to show your doctor:

Open Original Shared Link

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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