Positive Blood Test/negative Biopsy

[carmenm]

My eleven year old daughter has been having stomach issues since July, took her to regular pediatrician, he suggested a pediatric gastroenterologist. At our initial appointment he eluded that it probably isn't Celiac because she was "very healthy" as he put it (I think because she may be overweight). She then tested positive with a blood test, but the biopsy showed negative and they are telling me she does NOT have Celiac. They want her to take anti-spasmodic medication for the stomach pain because that is pretty much her only symptom at the moment, that and terrible headaches. Then we are to follow up in 2 weeks.

I'm not sure what her numbers were for the blood test and I don't know how many samples he took during the biopsy. It seems like from everything I am reading that she probably does indeed have it, but where should I go from here???

[gfcolorado]

My eleven year old daughter has been having stomach issues since July, took her to regular pediatrician, he suggested a pediatric gastroenterologist. At our initial appointment he eluded that it probably isn't Celiac because she was "very healthy" as he put it (I think because she may be overweight). She then tested positive with a blood test, but the biopsy showed negative and they are telling me she does NOT have Celiac. They want her to take anti-spasmodic medication for the stomach pain because that is pretty much her only symptom at the moment, that and terrible headaches. Then we are to follow up in 2 weeks.

I'm not sure what her numbers were for the blood test and I don't know how many samples he took during the biopsy. It seems like from everything I am reading that she probably does indeed have it, but where should I go from here???

I had "stomach issues" since I was a kid but didn't realize I had Celiac until I was 43. I would get really bad stomach aches and that was my only symptom so I thought it was just who I was . I was normal height, weight, had children easily and was really healthy and I think if I had been tested at 11, I probably would have tested negative. I haven't had a stomach ache in 3 years since being gluten-free and I used to get them 1-2x/month.

The first thing I would do is call the doctor's office and have them mail or fax you the results including the biopsy report. The biopsy report should tell you exactly what they saw and how many samples they took. You can post your test results here and although most of us aren't doctors, we've spent endless hours researching Celiac and gluten issues so this forum is a great resource.

I hope this helps! I know how frustrating it is.

[Gemini]

My eleven year old daughter has been having stomach issues since July, took her to regular pediatrician, he suggested a pediatric gastroenterologist. At our initial appointment he eluded that it probably isn't Celiac because she was "very healthy" as he put it (I think because she may be overweight). She then tested positive with a blood test, but the biopsy showed negative and they are telling me she does NOT have Celiac. They want her to take anti-spasmodic medication for the stomach pain because that is pretty much her only symptom at the moment, that and terrible headaches. Then we are to follow up in 2 weeks.

I'm not sure what her numbers were for the blood test and I don't know how many samples he took during the biopsy. It seems like from everything I am reading that she probably does indeed have it, but where should I go from here???

It would really help to know what her positive blood work numbers are but honestly? If your daughter tested positive on a Celiac panel, she has Celiac Disease, period. This is the kind of medical idiocy that we have had to put up with for years. Your daughter may not have had this disease long enough to show on a biopsy but is showing a reaction to gluten in her blood work. That is the first warning there is a gluten problem.

In my opinion, any doctor who questions the blood work and will not diagnose Celiac because her biopsy was supposedly clean is an idiot and shouldn't be practicing medicine. What they have told you is to keep feeding your daughter poison and they'll give you meds to suppress her symptoms. I would get copies of the blood work to keep but would not hesitate to start a gluten free trial diet immediately. Good luck to you and I hope your daughter feels better soon.

[carmenm]

I've been on the site for days now looking at questions and the answers and I truly believe at this point going gluten free is going to help her, I have major thyroid issues and I told her I would too and we can both see how much better we feel.

Can anyone explain why doctors are so unwilling to accept Celiac with a positive blood test alone? I understand the need for more than one determining factor, but in reading about the biopsy and issues with that being a "false negative" ie: not enough samples/where samples were taken from/how they were cut/etc...and the fact that the blood test seems to be a strong determining factor - why would those things be there unless you had it? unless something else quite obvious was wrong with you...what's the issue?

[Gemini]

I've been on the site for days now looking at questions and the answers and I truly believe at this point going gluten free is going to help her, I have major thyroid issues and I told her I would too and we can both see how much better we feel.

Can anyone explain why doctors are so unwilling to accept Celiac with a positive blood test alone? I understand the need for more than one determining factor, but in reading about the biopsy and issues with that being a "false negative" ie: not enough samples/where samples were taken from/how they were cut/etc...and the fact that the blood test seems to be a strong determining factor - why would those things be there unless you had it? unless something else quite obvious was wrong with you...what's the issue?

Doctors get hung up on the "Gold Standard" of diagnosis. If they don't see flattened villi, then you don't have Celiac, even if you are showing antibodies in your blood. They also seem to think that following a gluten free diet is next to impossible and you should only go on one if you have a definitive diagnosis. I have been following this diet for 6 years and honestly, the only time I felt deprived was when I realized I could not go to the Greek festival in town and eat the Greek food they had prepared. Other than that disappointment,

I eat what many people do, only I have to prepare it at home or find a restaurant with a good gluten-free menu. Many recipes can be modified to be gluten free and taste just as good....really! It will be challenging at first as you learn the ropes but with help from this forum, life on the gluten-free diet is satisfying and you'll be all the more healthier for it!

You might be surprised at how many symptoms there were that you never recognized until they are gone.

You'll do fine, along with your daughter, and adjustment will come. The options are getting larger everyday and the strides made since I went gluten-free have certainly tripled. Don't sweat this......we're here to help!

[Kquad]

I was positive blood and negative biopsy also. Time has proven the blood test correct, because other things popped up and pretty much proved it. The test, as I understand measures damage indirectly, so if it is early or your symptoms are mainly neuro, the blood test can be wrong

[carmenm]

I received my daughter's test results if anyone can explain for me I appreciate any help I can get...

As it is written on here:

IgA Total is 162 mg/dL

tTG Ab, IgA shows *H 35.3 unit/m

can anyone tell me what those mean, and what the numbers should be for someone who is "normal"?

As far as the biopsy report goes it says the following:

1. Small bowel boipsy for disacchiaridases sent to The Medical College of Wisconsin

- consisted of two tan pink to red tissue fragments .2 and .3 cm

SMALL BOWEL BIOPSY SPECIMEN SENT TO MEDICAL COLLEGE OF WISCONSIN FOR DISACCHARIDASES DETERMINATION. SEPARATE REPORT WILL FOLLOW.

2. Biopsy second portion of duodendum.

- consists of four pink-tan tissue fragments .2 - .3 cm

SECOND PORTION OF DUODENUM BIOPSY: FRAGMENTS OF SMALL INTESTINAL MUCOSA WITH NO SIGNIFICANT HISTOLOGIC ABNORMALITY

3. Biopsy duodenal bulb.

- consists three pink-tan tissue fragments .2, .3 cm

FRAGMENTS OF SMALL INTESTINAL MUCOSA WITH NO SIGNIFICANT HISTOLOGIC ABNORMALITY

4. Biopsy antrum of stomach.

- consists of two pale pink tissue fragments .2 and .5cm

FRAGMENTS OF GASTRIC MUCOSA WITH NO SIGNIFICANT HISTOLOGIC ABNORMALITY

GIEMSA STAIN FOR HELICOBACTER PYLORI-LIKE ORGANISMS IS NEGATIVE

5. Biopsy distal esophagus.

- consists of two white tissue fragments .3 and .4 cm

FRAGMENTS OF SQUAMOUS MUCOSA WITH NO SIGNIFICANT HISTOLOGIC ABNORMALITY.

Thanks again, if I should be including anything else, please let me know and I can look for it on these papers.