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Diagnosed In Chidhood But Not On Gluten Free Til Now

Pabboo

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Pabboo Newbie
Pabboo
Posted

Hi

My husband was diagnosed with celiac disease in childhood (at age around 11 following severe dermatitis hepetiformas). They confirmed the diagnosis with a biopsy and he was on a gluten free diet for a few years, but his mum stopped the diet (following a divorce - I think they thought it might all have been stress related).

He did not follow a gluten free diet again.

He had leukemia at 19 and a relapse at 21. So any health problems in adulthood have always been put down to that. The celiac diagnosis got lost at the bottom of his medical notes and was never mentioned.

He suffered stomach problems, particularily after periods of stress and anxiety, constipation, tiredness and low mood.

He had two bad rashes in the last few months (he is now 38) one was thought to be due to an antibiotic but the second had no known trigger and both were a lot like dermatitis hepetiformas.

So he put two and two together and stopped the gluten again. He thinks his mood and energy levels have improved. The rash went after a week. But we are not entierly sure if this is coincidence and positive thinking, or a physical change (the rash was also treated with antihistamines)

We spoke to the doctor and he seemed surprised about the celiac diagnosis and has suggested my husband try gluten again and "see what happens".

He accidently ate some crisps with gluten in today and had diarreah shortly after.

So, does it seem sensible to return to gluten? I figure that if it was clearly diagnosed in childhood, he should have stopped gluten for life and should not be eating it now, even if he has not had very major signs of celiac - surely the internal damage has continued all these years.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Hi

My husband was diagnosed with celiac disease in childhood (at age around 11 following severe dermatitis hepetiformas).

So, does it seem sensible to return to gluten? I figure that if it was clearly diagnosed in childhood, he should have stopped gluten for life and should not be eating it now, even if he has not had very major signs of celiac - surely the internal damage has continued all these years.

Welcome to the board. Ask any questions you need to a be sure to read as much as you can.

You figure right. You don't outgrow celiac. It sounds like he may have had the 'honeymoon' period that used to make doctors think you could outgrow celiac. It is now know that you don't. He does need to go back to strictly gluten free and hopefully he will be feeling much better soon.

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MitziG Enthusiast
MitziG
Posted

His doctor is an ill-informed moron! If he was diagnosed with celiac he should never, EVER "try gluten" again. Celiac does not go away and many of your husbands issues are likely directly related to celiac disease. If he were to continue eating gluten he puts himself at risk of acquiring many auto-immune disorders as well as intestinal lymphoma. Many doctors used to believe celiac was a disease of childhood that could be outgrown, but it is now known this is NOT true. His doctor is old school apparently, and could stand to be re-educated. Get your husband back on a strict gluten-free diet asap!!

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Lisa Mentor
Lisa
Posted

Welcome to the board. Ask any questions you need to a be sure to read as much as you can.

You figure right. You don't outgrow celiac. It sounds like he may have had the 'honeymoon' period that used to make doctors think you could outgrow celiac. It is now know that you don't. He does need to go back to strictly gluten free and hopefully he will be feeling much better soon.

Welcome also. Yes, Raven is correct. There is a greater knowledge of Celiac Disease and some great information is coming from the on-going research. It's a very exciting time.

Your husband has a diagnosis and I would encourage him to go strictly gluten free. I see no reason for a gluten challenge.

So very often, Celiac Disease is diagnosed as a secondary issue, ie. diabetes, thyroid issues, lymphoma, fibro and maybe even MS, as well as others.

I often wonder, if a test for Celiac Disease (as done in some European countries)would be required, would we see a decline in other more critical issues? Bet so. ;)

I wish your husband a steady (re)gain in health. :) And 'hang' with us for a while and we can help make your journey a bit easier.

Again, welcome!

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Pabboo Newbie
Pabboo
  • Author
Posted

Thank you all so much for your replies.

Having accidently eating several gluten-containing crisps (chips) yesterday he has had a sore area near his stomach today.

We both feel that the diarreah and this ache are enough proof (if proof were ever needed!) to stick to the gluten free diet. We will let his doctor know he tried gluten again, and that we want his notes to clearly reflect he has celiac.

Sounds, from what I have read, that his health (energy and mental health in particular, which have been recent causes for concern) will just keep improving with the diet.

He is finding it tough, especially trying to shop for quick and easy meals. We usually cook from scratch but both work and have a toddler, so it is handy being able to get a quick healthy steam meal from the supermarket. Until now we had no idea they were so bulked out with wheat based products.... :angry:

Ah, well, we will get thenhang of it.

It is especially hard as I have no gallbladder so am on a very low fat diet. Between us we are now hell to invite for dinner......

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ravenwoodglass Mentor
ravenwoodglass
Posted

So very often, Celiac Disease is diagnosed as a secondary issue, ie. diabetes, thyroid issues, lymphoma, fibro and maybe even MS, as well as others.

I often wonder, if a test for Celiac Disease (as done in some European countries)would be required, would we see a decline in other more critical issues? Bet so. ;)

I wonder the same thing. We are one of the most unhealthy populations in the world and I often wonder if Celiac isn't the primary issue that then leads to a lot of the other problems that develop. I had so many painful health issues that just went away on the diet, from migraines to arthritis to 'MS' that it really makes me feel testing the whole population routinely is the way to go. But if your villi are not destroyed US doctors will tell you to keep eating it until they are in many cases even if blood work is positive. Our doctors really need to get past the idea that celiac is just a GI disorder.

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