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debmom

Recovery Time For Gluten Free Diet

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My daughter may have non celiac gluten intolerance or celiac. It depends on which doctor we are talking to. At first she was diagnosed with endometriosis at 15, but the GYN decided that the diagnosis was wrong or at least incomplete. she had terrible, debilitating lower pelvic pain off and on for several months as well as some nausea and dizziness. In the past five months she has been diagnosed with thyroiditis, Reynauds, some eczyma, depression (not classicpresentation though) and mold allergies. The depression has been better and the pain has been a bit better for the past ten days after starting a gluten free diet 3 weeks ago. However, she continues to have bouts of debilitating pain for hours or a day or so. Is that to be expected? Overall I'd say she was a little bit better but not as much as the literature seems to indicate she should be or as much as we'd hoped. What have your experiences been with the recovery time after starting the diet?

(My sister has also been on a gluten free diet for three weeks and feels wonderful after a lifetime of ulcerative colitis and other GI problems.)

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Your daughter sounds like me - I was dx with Raynauds, Hashimotos (which I do have still), Insulin Resistance, PCOS, possible diabetes insipidus, just to name a few things before I finally found a dr. who knew what he was talking about <_<

Anyway, I'm not sure how much of that I really have or if all my problems (other than the thyroid) are just due to celiac, but I've been gluten-free for almost a year and just a month or 2 ago started feeling better. The only difference I noticed in the first couple of months was my night sweats and leg/foot cramps went away, but the frequent D and stomache cramps and all my other problems persisted until about month 7 or 8. I'm still not 100% (and have now started on antidepressants), but getting better, so give it time. It can take a long time for her intestines to heal.

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From what I've read, the recovery time takes longer the older you are before getting diagnosed, particularly if you've had the disease for awhile before receiving the diagnosis. For children they say it takes about 6 months completely gluten free before the intestines are fully healed; for adults it can take up to 2 years. (It sounds like your daughter is closer to the "adult" category than "child.") And some damage may not ever get completely healed. I can say that a couple others I know who were adults and probably had the disease for several years before getting diagnosed, after being gluten free for over a year, they feel dramatically better now.

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IF your daughter is Celiac/gluten intolerant, it could take a long time for all of these episodes to subside. For me it was almost instantaneous, but for others it's taken over a year. Don't lose hope yet. Are all of her personal care products (shampoo, face wash, nail polish, hair mousse, face cream, makeup, lotion, etc) gluten free? Does she have any art classes in which paints or modeling products are being used? Those items may contain gluten. Are all of her medications and vitamins gluten free? Is she eating in a school cafeteria? If so, they can be completely contaminated with gluten. Has she removed oats from her diet. Many Celiacs cannot handle oats, even uncontaminated ones. Is she sharing a toaster with glutenous breads? If so, that could be the culprit. Does she use the same strainer as you? Are utensils shared to serve gluten free foods and glutenous foods? Is she a nail biter or finger chewer? Are your non stick pans scratched? These could all be sources of glutening which can cause these painful episodes. Is she consuming any dairy? Many Celiacs are lactose intolerant at the beginning stages of healing. It may help her pain to go lactose or dairy free for a few months until she's a little more healed.

Really, three weeks is likely not long enough for all of her symptoms to resolve themselves. It's a good sign that she's experiencing some relief from the diet. If things don't start getting better in a month or two, perhaps you should look into other intolerances or other possible causes. It sounds though like she has already been tested for many, many things. Hopefully nothing else was overlooked. I hope you start to see improvement soon. We all know how long that road to recovery can be.


~Angie~

Gluten free since May 2004

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