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Why Am I Not Improving?

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Posted 31 March 2004 - 03:13 AM

To Jojes

Your degree of celiac sounds like my husband's. No fruits & vegetables in addition to the gluten free diet. He must have much damage since he's been sick for 28 years undiagnosed. He has had no biopsy yet, but I don't think it's needed but certainly good to have. We can tell by his slight improvement on a gluten free diet that he is celiac, plus he scored a stong positive on the blood test. I think for him it'll just take some time.

In your country, where do most of your gastros go to school? Manilla? If yes, perhaps you can write a letter to that school's gastoenterology dept. and ask for a referrral to a gastro who has training with celiac disease. Perhaps you can attach to your letter a celiac disease pamphlet from the CSA.

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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Posted 31 March 2004 - 03:30 AM


Thank you for your suggestion about doctors here but I am Irish and plan to see a Coeliac specialist in Ireland in June. I was diagnosed based on a biopsy as the relevent blood tests are not available here. According to the biopsy there was damage to my villi but not apprently extensive - perhaps the sampling area wasn't representative of the extent of my disease. I am 33 years old and have IBS (supposedly) for at least 7 years. celiac disease only started to really interfere with my life last October and it has dominated it since unfortunately. Perhaps 2 babies in 19 months was more than my system could handle.

Your husband is very fortunate that you are taking such an interest in his condition. I really hope that time does offer some respite.
Take Care
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Posted 31 March 2004 - 07:59 AM


You may have to restrict your diet more severely now, but you shouldn't have to do it forever. For many people the other intolerances are caused by the damage from the gluten (or the body being confused and mistaking other foods for gluten). These are supposedly the ones that eventually you might outgrow. Gluten is the only one that is 100% for life. So please don't be too discouraged.

I don't know if you can get digestive enzymes in the islands, but if you could you might want to try some. They really helped me out when I was having trouble digesting just about everything! I am now able to tolerate most foods (except gluten and dairy) and only have occasional indigestion.

God bless,
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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