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TTNOGluten

What Should I Expect

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I am relatively new to this diagnosis over the past 2 1/2 months, and for the first 1 1/2 months probably ingested gluten without realizing it, how frustrating, but over the past couple of weeks I have been what I would consider as being very religious with being strict. I have cross referenced meds, eat very little of anything, checked home products, yet I feel lousy. At best my belly pain is 4/10 constantly but can worsen to 8/10 with burning, knifelike sharp cramps, and mid back pain, and periodic burning. I have read at least 3-4 books which outline the fact that many people feel better within days to 2 weeks of starting the diet, and that is just not what I am seeing. Maybe I am inpatient, but being miserable seems to do that to me rather quickly. I have zero diarrhea which I am happy about, but wonder I guess if these are normal symptoms that I am having. Every other conceivable test has been negative, other than some chronic gastritis on my stomach biopsy. Is there anything to do other than diet to feel better, any treatment to use to try to offset some of these belly demons?? I have taken Zantac for the burning and Nexium peridoically, but nothing touches the cramps, including bentyl or Levsin.

I would love to here any and all recommendations. I applaud all of those posts who are managing to stay positive, I wish I could say the same as this has seriously taken a major toll on my well being

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Hi and welcome! Patience is a virtue here and a necessity. ;) With your diagnosis, it will take time and healing can take up to a couple of years of diligence for severe cases.

I would recommend that you give up dairy products for about three weeks and see if you symptoms improve. Often dairy can have the same symptoms as gluten - has to do with the absorption in the villi that are damaged due to celiac.

Give that a go for a few weeks and then slowly reintroduce dairy. Most times, it's only a temporary intolerance.

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I second Lisa's suggestion, and would also suggest that you give your stomach things that are easy to digest. Things like apple and tomato skins, dried beans, and a lot of the gluten substitute foods can be very hard on the stomach, the latter because they are starches you will not have been used to. Go easy on the salads and raw foods at first because the cooked are much easier to digest.

Healing is a prolonged process, longer for some than others, and you do have to be patient and celebrate the small improvements. And it is an up and down process, too -- some days you will feel better than others. I hope you are feeling better soon :)

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One thing I still am uncertain about is the gluten component of some skin products like gillette shaving gel and my wife's makeup etc, I am also not currently taking any probiotics or vitamins but I see them listed in many peoples blogs. Any recommendations as far as vitamins or probiotics. I live in a rural area without a lot of access to major health food stores. Again any advice is appreciated, thanks in advance

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It's really best if your doctor can test you for any deficiencies. The most common are Vits. D, A, E and K, potassium, magnesium, calcium, iron/ferritin and B12. If testing is not possible, try a sublingual B12 (absorbed better under the tongue, methylcobalamine is best), at least 2,000 iu Vit. D, a good B complex, a multivitamin and a multimineral (or the two combined) -- making sure they are all gluten free. If you can't find any good probiotics, take an acidophilus supplement with a high count (the more 'billions" the better :D ) until you can get some place with a greater variety and then ask for advice. Check for lactose too.

Many of us find initially that we are helped by digestive enzymes too, because gluten depresses the function of the pancreas. Again, you may have to wait until you get to someplace bigger to get these.

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I had reflux for years and not until I realized I probably had celiac (recently!) did I learn the wonders of pepto bismol. It's not perfect but it really takes the edge off for me. I cant stomach liquid meds, but I take the pills with tons of water and find it helps. Also, insufficient stomach acid (usually from lots of heartburn meds) can feel the same as too much acid, and I think that may have been my issue too. I was on prilosec (or something like it) for 15 years.

Everyone else has great advice too. Dairy, vitamins, and gluten-free dairy-free probiotics. :)

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