No Diagnosis Yet But Numbers Increasing

[suzyq63]

My 12 year old daughter is being monitored for celiac disease. She had blood work and an endoscopy in June 2008; both were negative. She had blood work done again in January but we weren't able to compare the numbers because the lab was using new reference ranges. She just had blood work done again and these were the results:

IGA antigliadin - 44.9 (was 35.9); reference range - <45 neg.; 45-55 equivocal; >55 positive

IGG antigliadin - 314 (was 194); same reference range as above

TTG - 5.40 (was 4.12); reference range - <15 negative; >15 positive

Her numbers obviously are going up. She deals with other issues also (diabetes, epilepsy, autism) and to go gluten-free will be extremely difficult for her, including major stress for me in dealing with emotional meltdowns. I know what symptoms to be on the lookout for and we are monitoring every 6 months. Am I being stupid in waiting to go gluten-free? Or are we monitoring closely enough that we should be able to avoid major problems? I feel a bit guilty in waiting, but I know just how difficult this transition will be and dread it.

Thanks.

[Lisa]

The prospect of beginning a gluten free life style for your daughter may be daunting to you at this time, but there have been many, many studies that children with Autism greatly improve on the gluten free diet, let alone that her number of increasing. Here are a couple articles.

Open Original Shared Link

Open Original Shared Link

Not one of us can walk in your shoes. But, I think you may be surprised to see some behaviour improvements on the gluten free diet. So it might not be as overwhelming as you anticipate.

We can take you through the diet, step by step. That's why we're here.

[no-more-muffins]

I don't think you are stupid for being apprehensive. It is a difficult change to make at first. With her numbers going up like that I think it is just a matter of time before she is in the positive range. The earlier you catch it and make the change the better, and like the pp said, it could actually really help her behavior. It is worth it to give it at try. It definitely looks like she is sensitive to gluten.

[ravenwoodglass]

If her antibodies are increasing she is reacting. I know the change is daunting at first but as mentioned by the other posters you may find that she gets a lot benefit from the diet. There are a lot of 'normal' meals that can be made gluten free easily and if you switch the families diet to a gluten free one rather than making seperate 'special' meals for her that might make it easier. You are in a good place for help and support and we are all here to make that transition easier for you. The diet may help not only with her autism but may also make her blood sugar and even the epilepsy easier to keep under control.

[gfb1]

My 12 year old daughter is being monitored for celiac disease. She had blood work and an endoscopy in June 2008; both were negative. She had blood work done again in January but we weren't able to compare the numbers because the lab was using new reference ranges. She just had blood work done again and these were the results:

IGA antigliadin - 44.9 (was 35.9); reference range - <45 neg.; 45-55 equivocal; >55 positive

IGG antigliadin - 314 (was 194); same reference range as above

TTG - 5.40 (was 4.12); reference range - <15 negative; >15 positive

Her numbers obviously are going up. She deals with other issues also (diabetes, epilepsy, autism) and to go gluten-free will be extremely difficult for her, including major stress for me in dealing with emotional meltdowns. I know what symptoms to be on the lookout for and we are monitoring every 6 months. Am I being stupid in waiting to go gluten-free? Or are we monitoring closely enough that we should be able to avoid major problems? I feel a bit guilty in waiting, but I know just how difficult this transition will be and dread it.

Thanks.

another day of only one post... very busy (which means business is good!!)

do not feel stupid or guilty. here's my (nonMD, though experienced in clinical labs) view of your post.

#1 assuming that your reference ranges are correct; your IgG antigliadin is POSITIVE and was on the previous test as well. this should NOT HAPPEN. gliadin (a digestive product of gluten) should NOT be in anyone's blood stream. it gets there by eating gluten, having incomplete digestion of the gluten (non-celiacs break gliadin down into shorter or single amino acids), then having it cross the intestinal mucosa and into the blood.

TTG is probably negative, as there hasn't been sufficient damage to the intestinal mucosa to release the TTG and then for your daughters body to react to it (by creating antibodies)

#2 be careful about reading nuance into test values 'increasing' or 'decreasing'. while you are provided a 'number', that 'number' is not a TRUE value (even if it were, it would be a value at a given moment in time -- and blood levels fluctuate for lots of reasons). hence, you are provided a 'range' that it either high, normal or low. there is no way to interpret 'increasing' or 'decreasing'.

suffice it to say, i would be very concerned about 2 positive IgG gliadin tests. enough to seriously consider going on a gluten free diet (unless, of course, if you and your doctor want to find positive TTG or EMA blood tests and then do an endoscopy -- all of which presuppose a certain level of intestinal damage and require consumption of gluten)

[suzyq63]

Thank you. I had actually forgotten that she had genetic testing done a year ago and has both the DQ2 and DQ8 genes. I guess that's another indication of a likely celiac diagnosis at some point.

We had done the gluten-free, casein-free diet several years ago (did it for 6-7 months) to see if it had any effect on the autism (she is high-functioning anyway), but it didn't seem to make any difference. Of course, the diet was a lot easier at that age than it would be now. She has actually lost some of those autism traits as she's gotten older; but she is still significantly developmentally delayed.

Also, does anyone know anything about neutrophils, lymphocytes, and eosinophils? Those results were also abnormal - low neutrophils, high lymphocytes and eosinophils. If I understand correctly, these are related to an immune system reaction. The gastro didn't mention them, but I have a copy of the lab report and noticed it.

Thank you so much for your help. I know I'll have plenty of questions. Fortunately I have a friend with celiac so I'll have some help locally also.