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Miserable Student
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Hi Everyone,

I've been gluten free now for five years after being diagnosed with Coeliacs when I was 15. I follow the diet strictly and my family and friends are all aware of the restrictions. Unfortunately, I've not experienced the life-changing effects that some people do when they finally cut gluten out of their diet. I still suffer from terrible mouth ulcers, stomach pain, diarrohea and depression (I've read that this my be linked to the disease aswell). Over the last year I've been in and out of hospital and they've told me that my villi are fully healed but can't find anything else that could be causing my problems.

I wondered if anybody had any suggestions at what could be affecting me in this way or whether I should just accept that it's just how I am. I've been recommended to just test myself by avoiding certain foods and observing the affects, but unfortunately with symptoms such as tiredness and stomach pain I find it hard to be objective because anything can cause tiredness! I find it especially hard as all the doctors tell me how each individual responds differently to gluten so I don't know how I can tell what is a reaction and what isn't. It's scary knowing that I may not be suffering from external symptoms but if I'm missing something I could still be damaging my insides.

Mainly I guess I just need some support from someone who doesn't seem to have benefitted immediately from a gluten free diet and what helped them, because after five years and not feeling any better it's getting hard to persevere with a lifestyle that I hate so much :(

Edited by BMeist
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I think its very possible that you have another intolerance that decided to show up after going gluten free. I've read on here some people, for example, have the same reaction to corn as they do to wheat.

Just some food for thought.

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First of all - hugs. There is nothing worse than a therapy that doesn't help.

Have you been tested for other autoimmune disorders? They tend to come in clusters, so that would be something I'd check. For example, many celiacs also have thyroid disorders (reason why I am here), though they don't cause mouth ulcers, as far as I know.

SO, yes, intolerances as shadowicewolf suggests, and I'd ask the doctor to check for other auto-antibodies, depending on the symptoms you are experiencing.

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Welcome to the forum, BMeist.

You have told us your villi are fully healed, which means you are doing a good job on the gluten. That should also mean you are able to tolerate lactose without any problems. But as shadowicewolf says, you could have additional food intolerance(s). Many of us find when we get rid of gluten that other foods jump into the fray and say "What about me?"

Typical foods that cause problems are soy, dairy (casein and/or lactose), corn, nightshades, fructins, salicylates, oats, other gluten-free grains like millet, amaranth and quinoa -- for some even rice.

Have you ever done an elimination diet where you identify five or six foods that are known safe for you and then add things in every week, one at a time? Obviously, if you react to a food you discard it and move on to the next.

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I agree with everything that has been advised, but I particularly encourage you to follow Mushroom's advice. I'm sure you can find a few foods that you KNOW you're fine with and then simply add in a new food once a week. I suspect you can't tolerate soy, oats, nightshades, rice, or gluten-free gums, so you shouldn't re-introduce those for a while. Believe me--you WILL start feeling better soon. Have you also tried taking L-Glutamine and digestive enzymes?

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Thanks for all your advice, it means a lot knowing there is other people out there who understand the difficulties. I'm just so reluctant to cut even more things out of my diet. I hate every day that I have to follow a gluten-free diet. I'm a student at university, living away from home, and if that isn't hard enough I have try and figure out what's going wrong with me as well.

I don't know how you guys have found it, but all the doctors I have spoken to have been useless, they send me to a dietician who just tells me to write a food diary and nothing ever changes.

At this point I don't know whether attempting to cut more things out of my diet is worth it. I just want a doctor to be able to do a test and make it better like they do to other people, you know.

I've not heard of L-Glutamine or Digestive Enzymes, is that something that gets prescribed or that I get hold of myself. And no,I've not had my nutreint levels checked, the doctors seem to have given up on me...

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Are you making your own meals or are you eating at your University's cafeterias and whatnot? If so, there is a major risk of cross contaminatin.

The thing with a food dairy is that they are supposed to help you narrow down what is bugging you. So if you feel cruddy after eating something you can identify it.

Doctors do not know everything. They cannot cure everything, and certainly they cannot test for everything either.

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Sorry, Yes I know what Food Diaries are for, my symptoms just aren't very clear. They could be caused by a bad day or a stomach bug and I cant determine how long after gluten I even get the symptoms. It seems to vary so much. There just seems to be no way that I can test myself.

And, I cook for myself, and if I eat out I'm extremely careful. I'm pretty sure I'm not missing anything.

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The purpose of a food diary is to see if there is any pattern to your symptoms. So you not only record what you eat and when you ate it, but what your symptoms are at various times of the day. Then you can see if two days after eating corn, e.g., you always have X. Or the evening of a day you eat soy you have Y. You are looking for a pattern of responses because most responses are not immediate.

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I take several things to help me eat. i'm newly diagnosed, but think i've had celiac disease for probably 40 years. with them, i'd say i feel pretty good and can eat most things, except those that i'm allergic to. here's the things that help me:

digestive enzymes: http://www.enzymedica.com/products/Digest_Gold

lactase enzymes: http://www.digestiveadvantage.com/lactose_defense_formula.asp

5HTP: http://www.pureformulas.com/5hydroxytryptophan-90-vegetarian-capsules-by-thorne-research.html

here's a post where i explained to someone else what each of those things does: http://www.celiac.com/gluten-free/topic/98724-worried-about-starvation/page__st__15

you've got my sympathy. trying to be gluten free at a university would be very hard, and then to still not be feeling good after you've been avoiding the food would be very discouraging. i think i'm soy sensitive, besides the gluten. you might trying just leaving out one of those other foods, like avoiding all soy, or avoiding all corn, for a week and see if that helps. i've never found any doc helpful with the stomach stuff. seems like we have to figure it out ourselves.

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    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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      St Johns Wort daily.
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      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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