Should I Go For More Testing?

[GabbyMax]

Hi there - I'm sure many of you have heard this all before, but it is new to me and I'm confused so please forgive the long post. I broke out in a rash (mostly red CRAZY itchy bumps with some blistering) all over legs and arms, some on trunk and back 4 months ago. I literally had hundreds of these things and have been totally miserable as nothing helped. At same time, had 2-3 days of very pale yellow stools (sorry for the TMI). Rash continued - got diagnosed by a dermatologist with eczema following a skin biopsy. Steroids didn't work at all, including kenalog (long term) injection. Went off gluten for a couple of weeks with no change. Went to allergist who said he thought it was dermatitis herpetiformis and did a blood test that came back negative, also checked sed rate which was low. Last week started a detox program which took me off of gluten and cleans out liver/kidneys and rash was gone in a few days. In addition, very fatigued most of time, can't eat cheese (makes me depressed) and I avoid fats as I don't absorb them. My brother recently died of NH lymphoma and my aunt has it now - I understand this is all increased with celiac in the family. The nutritionist who is supervising the detox thinks it is celiac disease due to the symptoms and how fast the rash cleared up when cleansed of gluten, and a friend with celiac disease is convinced that I need more testing. What do you think? I'm exhausted from the tests and pretty broke from out of pocket expense, but I have 3 kids and if this is genetic I need to find out if I have passed something along.

Thanks much for any wisdom you can shed my way....

[rinne]

Hi.

Testing for Celiac is notoriously unreliable, you may not have it but clearly you have a problem which is helped by the gluten free diet, why not stick with the diet for a while and see how it goes? You can always do a gluten challenge later, in the meantime you can give your body a well needed period of healing.

Some may disagree with me but I think your children can wait for testing as long as they seem to be healthy at this point. How are they?

I don't think genetic testing requires you to be on a diet with gluten in it, but others know more about testing.

[GabbyMax]

Hi.

Testing for Celiac is notoriously unreliable, you may not have it but clearly you have a problem which is helped by the gluten free diet, why not stick with the diet for a while and see how it goes? You can always do a gluten challenge later, in the meantime you can give your body a well needed period of healing.

Some may disagree with me but I think your children can wait for testing as long as they seem to be healthy at this point. How are they?

I don't think genetic testing requires you to be on a diet with gluten in it, but others know more about testing.

Hi Rinne - thanks so much for your response. My daughter is very moody (she is 21) and has always had reactions to food that affected her mood, and she has elimination issues as well. My son has issues with dairy - I have no idea whether these are gluten issues or just food in general. One of my nieces is currently going through treatment for depression and has lymphedema - she eats a ton of bread. My friend who has celiac disease went crazy when she heard that.

I like your idea of calming down and taking a wait and see approach. Obviously gluten is not my friend, but it may not be full fledged allergy/celiac issues.

Many thanks!

[rinne]

I'm sorry to hear that your children have issues too. The reality is they don't just go away by themselves, in fact if we continue to consume those foods we set ourselves up for a cascade of illness. If you have some time read some of the signatures on this board, you will see people sick for 10 years with a variety of issues before being diagnosed Celiac.

A simple diet of unprocessed wholesome foods has the ability to heal our bodies and minds.

I wish you well on this journey.

[GabbyMax]

Thanks again Rinne! I think I'll talk to the nutritionist to see what she says. My diet is actually pretty good (except I have been eating wheat/gluten which will have to stop if I have celiac disease). My kids have less great diets, but I'm working on it.

You are what you eat - wholesome is the plan. You are so right.