Questioning Results...where Do I Go From Here?

[ConfusedInKC]

In diagnosing celiac disease, how important is it that they run total IgA? All my bloodwork had negative results, but they didn't test my total IgA.

Question two - the lab report from my biopsy mentioned nothing about the Marsh system and I can't help but wonder how reliable the result is. The evaluation was little more than a sentence and didn't seem very thorough. What happens to biopsy samples afterwards? Is it possible to have them re-evaluated by a different lab?

I hate to question this so much. I just feel like I have finally found something to explain my digestive problems (severe diarrhea, bloating, gas, abdominal pain) over eight years - as well as other symptoms such as severe enamel defects, fluid in my abdomen, multiple vitamin/mineral deficiences, gallbladder problems, fatigue, etc. And the gluten-free diet is the only thing that has helped.

I am stunned that my lab results didn't give me what I needed to get diagnosed. And I don't know whether I should just follow the diet without a diagnosis or keep pushing for a diagnosis.

Help!

[kareng]

Hey fellow KC person. Do you have a copy of the blood work & biopsy pathology report. Mine didn't list Marsh either. But it clearly said Celiac.

Post exactly what the labs say. Someone here may be able to help.

[Roda]

My pathology report didn't report Marsh scale either. But by the description, crypt hyperplasia and villous atrophy, etc. I definately had celiac. I'm guessing it would have been a higher number on the marsh scale. Luckily I had normal villi after 1 1/2 years later, but they found an ulcer..All is well and dandy now.

[ConfusedInKC]

Celiac Panel

Transglutaminase Ab IgA

Result: .8 Reference Range: <4.0 U/mL

Reticulin Ab-Negative

Endomysial Abs, S - Negative

Anti-Gliad IgA, Deamidated

Result: 5 Reference Range: <20 units

Anti-Gliad IgG, Deamidated

Result: 6 Reference Range: <20 Units

Upper Endoscopy - Dr's report noted in antrium, mild patchy inflammation, edema, granular, no bleeding.

In the second part of duodenum mild pathcy inflammation, nodularity, atrophy, granular was seen with no bleeding.

Pathologist Report -

Segments of duodenal mucosa showed preservation of villus height, with moderate inflammation in lamina propria. Negative for evidence of celiac disease, duodenum.

***

On a side note, I can't help but wonder what the lower parts of my small intestines would look like. The pain I had was sometimes lower, though I did get quite a bit of pain from the gas and bloating up in my abdomen too.

What I do know is that I feel pretty amaizng after one month on the gluten-free diet. The doctor didn't really know how to explain that. It was pretty bad right before all this testing.

[domesticactivist]

Post your results, an yes, they should have run total iga

[mushroom]

Transglutaminase Ab IgA

Result: .8 Reference Range: <4.0 U/mL

This result appears mildly positive (you did not post the other ranges but you should be under 4 and you are at 8. You pathology also notes inflammation in the duodenum and the lamina propria. While not diagnosic of celiac disease, inflammation is often the precursor. And yes, they should have run a total IgA on you for validation of your results. And yes, you can get your slides and have another pathologist look at them if you wish. Obviously there is something that is not happy in your GI tract but most doctors, unlesss they are hit over the head with a hammer, will ignore minor aberrations or they would be treating everyone in the world for something (actually, they probably already are )

[ConfusedInKC]

I want to clarify something. I have had more than a few people look at me like I am a nut, but I also realize that I have done a pretty good job at hiding my stomach problems from them. My concern at this point is what to do with my children. I don't know if I should go ahead and remove gluten from their diets too, just as a precaution.

Pretty much everyone on my mother's side of the family has a diagnosis of IBS, so I can't help but wonder if its more than that. I know for me, it had gotten to the point where it was debilitating and I was afraid to leave the house because I couldn't always count on finding a restroom in time.

My children are relatively healthy. My oldest has had reoccuring episodes with blood in her urine - sometimes with an infection, sometimes without infection or another cause like kidney stones. She also has had too much calcium in her urine. I don't know that it's necessarily gluten-related, but I do worry that it could be since other tests have not found the cause of the problem. I probably need to at least ask their pediatrician to do the blood panel on them.

[mushroom]

Were you eating gluten free at the time of your testing? That could severely impact the results if you were. Or have you only gone gluten free after the testing?

[ConfusedInKC]

I hadn't gone gluten-free, but I had started to decrease the amount. My mom had commented to me that it had helped her, so I'd say that I had cut about 50% of the gluten out before I was tested. I don't know how much that could have affected my results.

[mushroom]

I'm afraid I don't know either At this point I am sure you do not want to do a gluten challenge. You COULD ask them to run the total serum IgA since that is a test they should have run in the first place. You could also have the genetic testing done, you and your mom, to see if you carry either of the two major celiac genes. While not diagnostic, it could show a predisposition to develop celiac disease. If you carriy the genes there is a chance of passing them to your children too, which could help with that decision about getting them tested.

[nora-n]

they ran the deamidatd gliadin IgG test, and it probably would have been elevated in case of celiac and IgA deficiency.

My guess is that your gluten intake was below the threshold for the tests to show positive.

The celiac tests are designed to only be positive in case of a lot of villi damage.

maybe a gene test next?