Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Miserable Student
0

11 posts in this topic

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
0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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?

1

Share this post


Link to post
Share on other sites




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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,681
    • Total Posts
      921,724
  • Topics

  • Posts

    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
    • Yes, I only eat one meal a day. Sometimes salad or fries or whatever I can find. And thanks for the replies again.
    • A colonoscopy is not used to diagnose celiac disease.  An endoscopy is used to obtain biopsies in the small intestine.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,680
    • Most Online
      3,093

    Newest Member
    Misalina
    Joined