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    Do you have questions about celiac disease or the gluten-free diet?

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Hi everyone. I am worried because I have been gluten free for 6 months now. I had horrible diarrhea 3-5 times a day before being diagnosed. I went gluten free and I sometimes didnt have diarrhea and was only going once to twice a day. I have noticed that the past month or so, I have been having the Big D just about everytime I go. The frequency has not changed, but I have wicked D. I called my doctor and he was rattling off the possibilities of what it could be, hiden gluten (i suppose its possible, but i try to be really careful), another food allergy, a bacteria problem, or a concurrent problem such as IBS. Then he mentioned refractory sprue and lymphoma and scared the poop out of me. He said its not too common but its a possibility!!! I thought it was extremely rare, I'm only 24 years old. I have been under a huge amount of stress lately, I dont know if that has any effect, but now Im freaked out and afraid to eat anything. I had a biopsy, I dont have microscopic colitis and he said everything in my colon looked fine and my small intestines only had flattened villi. I take vitamins that are gluten free, but I am still tired, and I have checked all my medication and chapstick and they are all gluten free. Would lotion or anything like that really affect me??? Refractory disease/lymphoma ranks right up there in my 10 top worst diseases to get right now. Did this happen to anyone else, and does anyone know how many people get refractory sprue and if so, what do you do for it.

Thanks and sorry for the detail.

Ash

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AsH:

I think that it is very irresponsible for your doctor to mention "all those bad" things without investigating. No wonder why you are scared to death. ....and on the phone as well. (excuse me, but he was an ass, with no bedside manner)

I would suggest that you write down a food diary. Write down everything that you eat and watch for a reaction. You may have an additional food allergy that is effecting your digestive system. Many new celiacs has an intolerance to diary. Try to eliminate that for a while. I can eat McD's fried, but don't tolerate milkshakes. It sounds like there is some hidden gluten getting into your system.

You also must check your lotions, shampoo, lipstick, toothpaste, nail polish, ie. anything that could find it's way into your mouth. Just licking stamps, will cause a gluten reaction. I don't know what you do work/home, but wash your hands often.

And, believe me, stress can reak havock on your system. So take a deep breath and re-group.

Start with the little things, before the big ones.

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Ash,

I'm 5 months into the diet and like you, still have diarrhea. I saw a helpful post on this site recommending a supplement called L-Glutamine and also probiotics. L-Glutamine helps your intestine heal faster. Probiotics add good bacteria to you intestine. Most likely, you intestinal bacteria is out of balance right now. The probiotics can make a big difference in your diarrhea. I have only been taking the supplements for 2 days, but have already noticed a difference. You might want to try it out and see if it works. It is doubtful that you could have lymphoma at this age. Since microscopic colitis has been ruled out, it is probably an issue with your intestinal bacteria. I agree that it was irresponsible for you doctor to scare you like that. Just try not to worry. I'm 22 and I used to worry about cancer and other awful things, but it's pointless to waste your feelings on something so remote and outside of your control . I hope you feel better. Good luck.

-Brian

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I've been gluten-free for 7 months now and just last week stopped having the D 6 plus times per day (used to have it 7-10 times PER DAY!). So, I wouldn't worry too much - sounds like your intestines still aren't healed (my villi were still flat at my 6 mo. biopsy), so just be vigilant and try to find your hidden gluten (or other food allergies that could be affecting you). In my case, I'm afraid it might be soy or casein, so I'm going to see if my dr. will test me for those when I go back in Jan. If not, there's always Enterolab :)

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Thanks for all the suggestions, I will have to look into the L-glutamine and the probiotics. That actually may help alot, I will also try to get tested for other food allergies. It sucks that everyone seems to have the same problems with the Big D, but it makes me feel better to know that I am not the only one. I have been looking at all my food very closely, so maybe I will find some hidden gluten (havent found any yet) but I will keep looking. I know this is still very early in my recovery, but my Dr. still worried me. I think I am going to find a new Dr., mine seems to be a butt-head. Thanks again,

Ash

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lol... I would prefer a doctor who would be that up front - over the phone. Of course, the important thing to realize is that the chances are very, very low. But, like all relationships, everyone's needs are different, and if this approach does not work for you, good for you for looking for a new doctor!

Yes, if you're still having problems, look at your lotion. Look at your kitchen utensils for contamination. Stop eating anything you didn't prepare yourself or comes from a dedicated, gluten-free factory. (Yes, this will eliminate most packaged products, but you *know* you have a problem with gluten, so you have to be 110% certain that all of that is out of your life to make it easier to identify if there is a different problem going on.)

Keeping a food log to look for other intolerances is a good idea, and most definitely stress can very much affect the bowels.

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This is what my mom's doctor did to her. So now I have an 81 yr old lady with gastritis and the big D on occasion, not every single meal, and she is scared to death. Her whole Christmas is ruined because she had a colonoscopy, came up with a diagnosis of gastritis, then ended up having more D. The doctor never spoke to her once since she came out of anesthesia but rather ordered an abdominal cavity CT scan. No going the easy route, no blood tests first, no discussion on foods. So I am telling her how maybe something is sneaking in that she shouldnt be eating, but she isnt listening to me because the doctor scared her so badly.

I have a few medical conditions of my own, but I guess I need to be a Celiac advocate now too.

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yup, l-glutamine and probiotics really seem to help. I take the l-glut powder. I have been on it 4 months, 20 grams twice a days. I just reduced it to 20 grams. Words of experience I order the powder on line at totalglutamine.com about 1/4 the price. Also probiotics with FOS have helped me the most.

Kind of a nasty taste until you get used to it. I like it best in milk with sugar. I add flaxseed oil to it, let it sit a few minutes and it mixes in.

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Doctors can be a pain, I think most of them lack common sense. Im a vet tech and we always try to do the most non invasive diagnostics first (because it makes the most sense and keeps the price down). I am also getting my masters in physiology so I have a fairly good background in medicine. Thats the part about doctors I hate, I just want someone to use their head. I knew that the chances of refractory was slim, but the fact that he suggested it got me worried. The fact that he even mentioned it makes me think he is an alarmest, and that just bugs me. I had to fight with my primary to get the blood test and then I got a specialist who is odd. Sorry about the rant, your mothers doctor also sounds like a butthead. Be aggresive with him to get what you want, and persistant. But I do think I will order the L-glut and the probiotics online. Im sure it would help alot. Thanks for the website. I cant wait for my guts to heal.

Ash

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yup, l-glutamine and probiotics really seem to help.

I was curious what this is so did a google search and found this very interesting article from Alternative Medicine Review through the Lame Advertisement site. link to article Below is part of that article.

L-Glutamine

Alternative Medicine Review, August, 2001

Gastrointestinal Disease

The gastrointestinal tract is by far the greatest user of glutamine in the body, as enterocytes in the intestinal epithelium use glutamine as their principal metabolic fuel. Most of the research on glutamine and its connection to intestinal permeability has been conducted in conjunction with the use of TPN. Commercially available TPN solutions do not contain glutamine, which can result in atrophy of the mucosa and villi of the small intestine. Addition of glutamine to the TPN solution reverses mucosal atrophy associated with various gastrointestinal conditions.[3] Research has demonstrated glutamine-enriched TPN decreases villous atrophy, increases jejunal weight, and decreases intestinal permeability.[4,5] Trauma, infection, starvation, chemotherapy, and other stressors are all associated with a derangement of normal intestinal permeability. One potential consequence of increased intestinal permeability is microbial translocation. Bacteria, fungi, and their toxins may translocate across the mucosal barrier into the bloodstream and cause sepsis.[6] In numerous animal studies of experimentally induced intestinal hyperpermeability, the addition of glutamine or glutamine dipeptides (stable dipeptides of glutamine with alanine or glycine) to TPN improved gut barrier function, as well as immune activity in the gut.[7] Conditions characterized by increased intestinal permeability that might benefit from glutamine supplementation include food allergies and associated conditions, Crohn's disease, ulcerative colitis, and irritable bowel syndrome. A clinical study of ulcerative colitis patients demonstrated that feeding 30 g daily of glutamine-rich germinated barley foodstuff (GBF) for four weeks resulted in significant clinical and endoscopic improvement, independent of disease state. Disease exacerbation returned when GBF treatment was discontinued.[8] It has also been suggested that cabbage juice consumption may provide benefit to patients with gastric ulcers and gastritis, by virtue of its high glutamine content.

Wound Healing

The gastrointestinal tract has a large number of immune cells along its length -- fibroblasts, lymphocytes, and macrophages. The ability of glutamine to nourish these immune cells may account for its positive impact on the gastrointestinal tract and immunity. Healing of surgical wounds, trauma injuries, and bums is accomplished in part by the actions of these immune cells. Their proper functioning is dependent on glutamine as a metabolic fuel for growth and proliferation. Therefore, a depletion of intracellular glutamine can slow growth of these cells, and ultimately prolong healing.[1] A small clinical study conducted recently in Poland demonstrated glutamine-supplemented TPN rapidly improved a number of immune parameters in malnourished surgical patients with sepsis.[9] Additional clinical trials also suggest that glutamine supplementation, as well as arginine and omega-3 fatty acids, may promote restoration of normal tissue function and intestinal permeability in post-operative patients.[10,11]

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I was curious what this is so did a google search and found this very interesting article from Alternative Medicine Review through the Lame Advertisement site. link to article Below is part of that article.

My Mom has had two severe spells of obvious contamination over 17 years. One time she needed steroids. The last time I couldnt get her any help from any doctor at all. So she dealt with it.

I wonder if the spells (accidental contamination) caused her to have problems of an ongoing nature due to damage being done.

Any thoughts?

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Tasha,

Has your mother gone gluten-free. If not, is she willing to give it a try?

I was always getting gastritis - from many years ago up until about a month ago when after being gluten-free for a few months allowed for enough healing that I no longer have acid stomach issues.

Edit: Oh, I see now from your signature that your mother has celiac.

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Tasha,

Has your mother gone gluten-free. If not, is she willing to give it a try?

I was always getting gastritis - from many years ago up until about a month ago when after being gluten-free for a few months allowed for enough healing that I no longer have acid stomach issues.

Edit: Oh, I see now from your signature that your mother has celiac.

Yep. She has been gluten-free for about 17 years. She is really careful, but she is 81 yrs old and she isnt real careful about vitamins and things like that.

I found out she has been drinking about half a cup of rice milk a day, and I am not sure if that might not be giving her a problem at this time.

I of course pray the scan doesnt show any severe problems, but I am angry that the stupid doctor went with that before looking at the Celiac issue.

I told mom I was going to get her over here to look at this web site just to see that not every Celiac is problem free!

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