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Miserable Student


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10 replies to this topic

#1 BMeist

 
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Posted 15 December 2012 - 04:49 PM

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, 15 December 2012 - 05:04 PM.

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#2 shadowicewolf

 
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Posted 15 December 2012 - 06:33 PM

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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#3 ButterflyChaser

 
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Posted 15 December 2012 - 06:54 PM

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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Hashimoto's thyroiditis and Grave's disease (2011). It must have been a Black Friday.
Intestinal dysbiosis. Suspected damage to my vili (2012). NCGS according to my dermatologist upon seeing my post-wheat rash.

Gluten-free. Sept 2012.
Canola, almonds, soy = evil.

Grain-free, legume-free. December 2012.
No peanuts and tree nuts. February 2013.
Erb-Duchenne palsy from birth trauma.

My body is trying to kill me.


#4 mushroom

 
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Posted 15 December 2012 - 06:55 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 rosetapper23

 
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Posted 15 December 2012 - 07:14 PM

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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#6 1desperateladysaved

 
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Posted 15 December 2012 - 08:52 PM

Have you also had your nutrient levels checks?
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#7 BMeist

 
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Posted 16 December 2012 - 04:08 PM

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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#8 shadowicewolf

 
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Posted 16 December 2012 - 04:14 PM

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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#9 BMeist

 
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Posted 16 December 2012 - 04:32 PM

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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#10 mushroom

 
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Posted 16 December 2012 - 05:05 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 Madagascar

 
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Posted 16 December 2012 - 08:30 PM

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.enzymedic...cts/Digest_Gold
lactase enzymes: http://www.digestive...nse_formula.asp
5HTP: http://www.pureformu...e-research.html

here's a post where i explained to someone else what each of those things does: http://www.celiac.co...on/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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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.




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