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Mariann Are You Out There?

the2ofus

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the2ofus Rookie
the2ofus
Posted

Hi Mariann

I was reading you post in the other thread. I posted something new so it wasn't lost in all the others.

You mentioned that your son does not have the gene but is gluten intolerant. Has he had any allergy testing to find this out?

I just started the Irritable Bowel Syndrome diet a few days ago. On this I am eating gluten. Not anything that is considered to be insoluble fiber, but wheat non the less. This would only mean that my gluten consumption is lessened. It's to soon to tell if I feel any different. And if I do feel different, is it the reduction in wheat consumption or is it the total change in how I'm eating, (ie: reduction in fats, vegetable skins, whole wheat etc.?)

Here are my blood work results. Non of the numbers are bad.

Anti-Gliadin IgA 0.7 u/ml

Anti-Gliadin IgG 6.2 u/ml

Anti-Endomysial IgA Negative

Anti-Human Tissue Transglutaminase IgA 1.6 u/ml

Total Serum IgA 215 mg/dl

Gene HLA-DQ2/HLA-DQ8 not detected

If there is still a possibility that I have a gluten intolerance but not celiac I would like to find out. Until I read you last post I thought no gene made it cut and dry.

Thank you for all your information

Robin

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gf4life Enthusiast
gf4life
Posted

Hi Robin,

We were all tested through Enterolab. The gene testing is done through Laboratories at Bonfils and they do not just test for HLA-DQ2 & DQ8, they also check for other genes that cause gluten intolerance. Celiac Disease is the worst form of gluten intolerance. Dr. Fine's tests pick up other levels of gluten intolerance, too.

My son also is seeing a Rheumatologist/Infectious Disease/Immunologist doctor at our local choldren's hospital. He says that based on his test results through Enterolab he doesn't want to rule out Celiac Disease just becasue he doesn't have the gene. He said that we just don't know enough about the disease to say for sure that those two genetic markers are the only way you can have celiac disease.

My opinion is that if you feel better gluten free, then eat gluten free. I tested negative on all the conventional tests, but positive on Enterolab tests. Since I had been off and on gluten free for a while a few times, I am pretty sure that messed with my results of the blood tests and biopsy. I feel much better gluten free and I feel worse when I have a gluten accident. So whether we are called Celiac or gluten intolerant, it doesn't matter to me. We will eat gluten free and be healthier for it.

I hope you do alright on the new diet you are starting. You may not be Celiac. It is hard to tell. But if you start having problems please conscider further testing.

God bless,

Mariann

the2ofus Rookie
the2ofus
Posted
  • Author

Thanks Mariann,

I'm going to keep a posible gluten intolerance in the back of my mind as we try this new diet. I am actually looking to take note what items we are eating say gluten free for future referance. I know my daughter had a soy pudding and a glass of soy smoothie and then had diarrhae a couple hours later. This is going to be a very long process.

I'm going for my endoscopy on may 11. I don't think with my blood work results the doctor is going to want to take a biopsy any more but I havn't asked her yet. I know she is going to be looking for reasons for my heartburn and swallowing problems. I think they are all related.

Thanks again for all your help

Robin

PS Do you live in Connecticut? I took my daughter to Dr. Hyams at Chaldrens' satalite office in Avon.

gf4life Enthusiast
gf4life
Posted

Hi Robin,

It is good that you are taking notes on what you are eating. Your daughter might have a problem with soy. Keep an eye on it. One out of three of my children is also intolerant to soy. He can handle it in small amounts (like a few pretzels made with soy flour or some candy with soy lecithin), but more than one serving of soy milk or soy pudding and he is rolling on the floor in pain from the stomachache.

We live in Central California. My children see a Pediatric GI by the name of Dr. Gugig at the Children's Hostpital of Central California (formerly Valley Children's Hospital).

I hope you all do well with the diet.

God bless,

Mariann

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    • captaincrab55
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    • rei.b
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      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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