Can't catch a break

[LookingforAnswers15]

Hi all,

so I was diagnosed with Celiac (Marsh 3C) in May, 2014 and at that time my Anti-Gliadin IGA was 221. I immediately went on a very strict  gluten-free diet, and the antibodies were going down. By August of 2015, they were 22. Last month, I repeated the test, expecting it to be close to 0. I was shocked to find out that Anti-Gliadin IGA was >200. I am beyond shocked. As some of you know, I was the one who at first kept saying to everyone to stay away from processed gluten-free food. However, as my antibodies were going down, I felt more comfortable eating processed gluten-free food. I never ate anything that was not declared gluten-free, i have my own set of dishes, i buy gluten-free make up and shampoos, etc. I live in a country that is not very educated about celiac disease and I am getting suspicious of some candies and chocolate, which were declared gluten-free but thinking about it now, I would not have been surprised if they were just marked that way because they see that more people are talking about gluten-free food. It seems that over a year of my hard work to get down my antibodies was lost and i am scared of what it has done to my body. 

Since I got the test results, I went back to the old way of eating: only fruits, veggies and meat. I did some allergy test, which showed what food I am reacting to (corn, rice, some fruits and veggies,etc) and I stopped eating all of it except bananas on occasion. I daily eat a bone broth soup, veggies and fruits. In addition, sometimes, i add either fish, chicken or lamb.

Of course, when it rains, it pours... Yesterday I went to hair dresser after a long time, and for the first time ever, I forgot my gluten-free shampoo. I did not remember it until she literally was washing my hair. It has been a crazy week at work and it just slipped my mind. Although the hair dresser did an amazing blowout, as soon as I got home (25-30 mins later), I washed my hair with my gluten-free shampoo and took a shower. I did not eat much last night (just banana, grapefruit, and cherries) and my stomach is a bit swollen this morning. These fruits I eat regularly and have not had this reaction before, so now I worry it could have been caused by shampoo. Could have a hair dye and shampoo caused this?

My test results are:

Anti-Gliadin IGA: > 200 (normal range < than 25)

Tissue Transglut. IgG:0,39, normal range < than 1

Anti-gliadin IgA: 15,30, normal range less < 25

ANA positive, not given the range

IgE - positive >200 

Any advice? Should I worry about refractory celiac disease? I just learned about it online. You would think that someone like me who has tried so hard to figure out what was going on with me would also check what Marsh 3C meant. Not even one doctor mentioned anything about this. From this site, I knew it probably meant a lot of damage as I saw some people had Marsh 3b, but I did not google it. Now looking at it, I see how much more dangerous it is and how it can cause lymphoma.

Would taking the activated charcoal capsules help if I got glutened by hair products? Thank you!

[ravenwoodglass]

Unless you have open sores on your scalp or the shampoo or dye gets in your eyes or nose you wouldn't be glutened by them. Did you ask your stylist if you could read the ingredients of the products she used? They may have been safe anyway.  Sorry you are having such a hard time. Your plan to go back to eating just whole foods is a good one.  If you eat gluten-free oats you may want to drop them for a while. Some of us will react to those even when certified gluten free.  Hope your feeling better soon.

[Ennis-TX]

As raven mentioned some celiacs I think about 10% have the same reaction to oats and can not eat them even if gluten free. As to the shampoo, the real danger from shampoo is touching your hair, then touching your food before eating it. As those of us with long hair know this happens ALL THE TIME. So gluten free shampoos are a must for us. You DO not get the gluten from using the shampoo itself but from the secondary contact afterwards or getting it into your blood stream via cuts, sores, or eyes. Now transitioning back the the whole foods only diet is a good idea, try what your doing with it for a month then get the antibodies checked again. Who knows maybe one of you daily processed staples, condiments, spices, etc had gluten in it. It is not uncommon for spices, and some condiments to use gluten based ingredients in them. Especially in some other countries (where are you exactly?), where wheat might be more common and used as a flow agent, thickener, etc.

Do you have any other symptoms with gluten exposure normally?

[Victoria1234]

I agree with all who have posted.

i would like to know as well if your symptoms have gotten better with your diet? Do you know if you've been glistened in the past? What are your symptoms then?