Help Interpreting My Test Results, Is A Biopsy Needed?

[BethSLP]

Hi there,

I am new to these forums and would appreciate any insight into my test results and what path I should take next.

A short background on me: I am a 34 yr old female. Was diagnosed with IBS at age 17. Symptoms got progressively worse over time. Diarrhea was my main complaint in high school and college. After the birth of my kids, it became long bouts of constipation that alternated with diarrhea. I also have a diagnosis of Mitral Valve Prolapse (which is another condition that is not well understood but thought to be autoimmune in nature). With both of my pregnancies, I had pre-eclampsia (which they are now also starting to understand as an autoimmune condition). My symptoms became so significant that I felt I could no longer ignore them. Severe constipation, fatigue, joint pain, and generally feeling unwell/old. I was also looking increasingly puffy. I went to a GI initially and was blown off. he suggested miralax and benefiber (as my main complaint was constipation). Because I am overweight, hesaid celiac was unlikely. He was convinced I just needed more fiber. I am fairly certain he assumed I was lying about the large amount of veggies and fruit my family eats. my husband has a gigantic organic garden and we eat fresh veggies all the time. He would not even order the celiac panel (argh). He scolded me for doing too much internet research and in general, was very dismissive of my concerns. I tried the miralax and benefiber and all it did was irritate me and make my cramping worse. It didn't fix anything. I went to a naturopath next (who greatly helped my daughter when she was 2 and constantly with ear infections, sleep apnea, etc.). In her case, dairy was the main culprit (although now I suspect gluten may be also as she has mushy poos that stick to the toilet every time and have to be pushed down the toilet with a toilet brush, a distended belly, and lately has been waking up complaining of nausea and vomiting for about 3 hours on and off. this vomiting thing has happened 3 times. the first two were within days of eachother so I thought it was a stomach bug. this last time was a week later and freaked me out. so I quickly made a pediatrician appt. we go to the pediatrician on thurs. at the time we did an elimination diet with milena at the age of 2 for the ear infections and came up with dairy as the main culprit, we were fixated on the excess congestion etc. not so much on her GI issues. I think we missed recognizing the gluten part. When I look back, the portion of the elimination diet when she was Gluten-free Casein-free was when she was at her best. Health wise, emotions, etc. were more even. When you can say your 2 yr old is compliant and happy most of the time, that is something Ironically, my dad is currently seeing a hematologist to try and figure out why he has persistent and non responsive anemia. I suggested he also pursue celiac testing as I read that the AGA suggests anyone with unexplained anemia should be tested. So I am doing as much research as I can prior to Milena's appt with the pediatrician on Thurs. I am lucky in that my pediatrician is incredibly smart and up to date on research on everything I've thrown at him, and he happens to be celiac himself which should help us get some direction.

So I figured I better go pick up my test results so I could thoroughly research them before taking her in Thurs. and I got the paper and brought it home just now. Before I only had the descriptions from the naturopath over the phone. Its difficult to correlate these results to the traditional celiac panel. The tests are done by Cyrex Labs and meant to pick up on an array of gluten sensitivities, not just the traditional panel. From what I understand the traditional panel only checks Gliadin, but there are other parts to gluten like glutenin etc. that one can react to. You always hear about the people with negative blood tests that get a positive biopsy which is supposedly why this test array was developed. To catch those who fall through the traditional testing cracks and have sensitivities to gluten. If I had known my test results would have been this significant (at least to my untrained ignorant eye), I probably would have pursued traditional testing with another non-jerk GI. But at the time, I felt pretty defeated by conventional medicine and I have a lot of confidence in my naturopath. He worked miracles on my little girl.

Anyhow, these are my results (normal range in parentheses):

Wheat IgG- Out of Range- 3.22 (0.3-1.3)

Wheat IgA- Normal- 1.87 (0.4-2.4)

Wheat Germ Agglutinin IgG- Out of Range- 3.36 (0.3-1.5)

Wheat Germ Agglutinin IgA- Equivocal- 1.82 (0.9-1.9)

Alpha Gliadin 33 MER IgG- Out of Range- 3.23 (0.3-1.4)

Alpha Gliadin 33 MER IgA- Normal- 1.48 (0.6-1.8)8)

Alpha Gliadin 17 MER IgG- Out of Range- 3.72 (0.3-1.5)

Alpha Gliadin 17 MER IgA- Out of Range- 2.06 (0.6-2.0)

Gamma Gliadin 15 MER IgG- Out of Range- 3.93 (0.4- 1.7)

Gamma Gliadin 15 MER IgA- Equivocal- 1.74 (0.7-1.9)

Omega Gliadin IgG- Out of Range- 3.79 (0.5-1.6)

Omega Gliadin IgA- Out of Range- 1.91 (0.6-1.8)8)

Glutenin IgG- Out of Range- 3.91 (0.2-1.5)

Glutenin IgA- Out of Range- 1.94 (0.5-1.7)

Gluteomorphin IgG- Out of Range- 3.94 (0.3-1.5)

Gluteomorphin IgA- Normal- 1.00 (0.6-1.8)8)

Prodynorphin IgG- Out of Range- 2.78 (0.4-1.7)

Prodynorphin IgA- Out of Range- 2.49 (0.6-1.8)8)

Gliadin-Transglutaminase IgG- Out of Range- 3.86 (0.4-1.6)

Gliadin-Transglutaminase IgA- Out of Range- 1.62 (0.6-1.6)

Transglutaminase IgG- Out of Range- 3.14 (0.5-1.4)

Transglutaminase IgA- Normal- 0.76 (0.6-1.5)

Glutamic Acid Decarboxylase (GAD65)IgG- Out of Range- 4.09 (0.4-1.3)

Glutamic Acid Decarboxylase (GAD65)IgA- Normal- 1.20 (0.8-1.5)

I recognize this probably looks like a bunch of gobblety gook as compared to the few tests done for celiac traditionally. However, from what I can gather, the traditional panel looks at IgA and IgG for AlphaGliadin 33 and at tissue transglutaminase.

From what I can gather, it looks like if I had the traditional panel I would be significantly out of range on the IgG gliadin portion and the transglutaminase IgG. But both IgAs are within the normal range. That said, I've read that part of the traditional celiac panel is taking a total IgA measure as many celiacs naturally have low IgA and this yields a false negative if not compared to total overall IgA. Now I'm annoyed I don't know more (cyrex labs does not report total IgA) and I'm a month and a half into a gluten free diet. I do know that when I accidentally had soy sauce at a restaurant, I had a strong reaction before the meal was even over. In both celiac and gluten sensitivity, the solution is a gluten free diet. I keep reading about the importance of a celiac diagnosis to "insure patient compliance" as people without an official diagnosis have a tendency to cheat. I know I won't. I feel so much better without it and i know its important to be strict. That said, do you feel there are benefits to having an official diagnosis? It sounds like from what I'm reading I would have to eat a lot of gluten for many weeks prior to having one done if I pursued it at this point. the thought is disturbing. it feels wrong to intentionally poison myself for the sake of getting a diagnosis if the treatment is the same. Is yearly blood work done for celiac and its important to have a baseline? is it important to have a baseline biopsy? again, I will ask my daughter's doctor some of these questions. but I thought I would ask you from your perspective if having a celiac diagnosis brings a benefit that I maybe haven't thought of. I wonder if I risk getting glutenized as a senior citizen in a hospital etc. if I don't have this officially on file. Stuff like that.....

I also read that high IgG results can mean other autoimmune issues beside celiac?? Does anyone know anything about this?

when I went on the elimination diet (basically paleo diet) while waiting for my results, I lost 3 lbs. in 24 hours. I was so bloated and the diet immediately helped. I was down 8 lbs. at the end of the first week, and have lost 17 in less than a month. So while eating Gluten-free Casein-free (and initially paleo for the first three weeks) is definetly "healthier" (no processed junk) the weight loss was an indication to me as well that I had something messed up going on in my body. I am also able to go to the restroom (multiple times a day) whereas before I would sometimes not go for almost a week. While my test results came back negative for corn, rice, and potato, I still find that I can get constipated if I don't really limit my intake of those items. I'm hoping that in time that improves with my gut able to heal.

Any thoughts or suggestions are appreciated. I'm wondering if I should just make an appt. with a new GI and bring this paper to hash it out, or what to do next. Or perhaps I should just be content I'm aware of my problem (even if I can't officially call it celiac, I know for sure I'm gluten sensitive as this testing and the diet challenge has shown me).

Oh, and I guess I should mention that I took the cross reactive foods test with cyrex and it showed that I was highly reactive to all the dairy items. everything else was normal (sesame, hemp, corn, rice, potato, etc.)

Thanks so much for reading this novel!

Sincerely,

Beth