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canutillo

New Here And Boy, Do I Have Questions!

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A little background on me: I was diagnosed with Celiac Disease about a year ago after suffering from DH for 4 years (I mean suffering- it grew until it covered most of my legs, across my back side, and sometimes my elbows). I had every test done, all negative. Until a visiting doctor who had just studied DH was able to look at me. She looked at my records, looked at my legs and told me that she knew I had it and to ignore the tests. I've been gluten-free ever since and have never felt better. My legs are healing, I've lost 20 lbs (still have another 20 to go), and I actually have some energy again.

Well, we have 4 kids. Our ds16 has always had, um, bowel issues. He often complains of stomach aches and cramps that will keep him home from school. Last week, he broke out in three spots that looked a lot like my dh when it was first starting.

I took him to his doctor on Monday. He drew a celiac panel and also dx'd psoriasis (is there a relation since they are both auto-immune?) with a referal to a derm for that.

We should have the results of the blood panel next week.

My concern is the insane rate of false negatives. My gut tells me to just have him go gluten-free. He and my husband are against this, because it is very restrictive. But I truly believe that he will feel so much better.

I know I don't have a specific question- but does anyone have any words of encouragement or advice?

Thanks!

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Celiac is very strongly genetic and all 1st degree relatives should be tested after one is diagnosed. I do hope your son doesn't have false negative results and if they are positive it would be a good idea for your husband to be tested also.

One thing you may want to consider is making the whole house gluten free after all testing is done.

Once folks get used to the diet it isn't as restrictive as many think, IMHO. You can still eat pizza, breads, cakes etc. they just aren't made out of gluten flours.

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Yes, there is certainly a link between gluten and psoriasis. And unfortunately, if you let the psoriasis gain too much control even going gluten free does not get rid of it. I have what is referred to as psoriatic arthritis (rheumatoid arthritis that is seronegative - blood does not test positive - combined with psoriasis) and both are autoimmune. I went gluten free without any testing because I learned of the link between RA, and other forms of arthritis, with gluten (it had never occurred to any of my doctors to test me) and was amazed at the response in my GI tract. Unfortunately the other autoimmunes are entrenched and unresponsive. I had had little red spots on my skin for years that didn't itch and the skin used to flake over and fall off and even my regular dermatologist said she would have to biopsy to see what it was. I didn't have it done because it didn't bother me. Even if I had had it done I doubt that 25 years ago anybody would have made the connection to gluten. So tell my story to your son. The only way I get relief from either disease now is by injecting myself with a very expensive (fortunately my U.S. insurance covers it) medication called a TNF inhibitor, every two weeks, and I have to fly to the U.S. every year to get it. I am lucky that so far I have not experienced any of the very negative side effects of this powerful medication.

Of course, you son could also be in the beginning stages of DH, although if it doesn't itch (my psoriasis didn't initially) it may well be psoriasis. We all develop our individual, unique autoimmune diseases :o

Yes, you should have all your children tested because the disease is genetically based.

I wish you all the best. :)

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