Miserable Student

[BMeist]

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

[shadowicewolf]

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.

[ButterflyChaser]

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.

[mushroom]

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.

[rosetapper23]

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?

[1desperateladysaved]

Have you also had your nutrient levels checks?

[BMeist]

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...

[shadowicewolf]

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.

[BMeist]

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.

[mushroom]

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.

[Madagascar]

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: Open Original Shared Link

lactase enzymes: Open Original Shared Link

5HTP: Open Original Shared Link

here's a post where i explained to someone else what each of those things does: https://www.celiac.com/forums/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.