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My Gluten-Free Story

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I'm not very keen on joining fora on any subject but since I only run into people who know people that are on a gluten-free diet but I never actually get to talk to people who are on a gluten-free diet I'd really like to get a chance at doing so.

I have not been diagnosed with celiac disease nor a wheat allergy but I do know that a gluten-free diet has done wonders for me and I hope I'm not stepping out of line by telling my story here. I'd really like some input on the different facets of my 'history' and perhaps get a few questions answered. Just writing it down helps me get things straightened out in my head so I guess I could consider it therapeutical.

I am leaving some of the more specific details out of privacy concerns.

I've been depressed and tired since early child-hood. (Shrinks had no clue.) It was always attributed to other circumstances (Early dead of a parent, divorce, difficult eater and as a result underweight). When I came of age, I decided that I wanted the constant tiredness and miserableness to stop or else I'd take my own life at some point. I started talking to the GP's assigned to me and doing research. A few years ago, I was told I had a sensitivity to sugar..

Seemed to make sense. I changed my diet, stopped eating foodstuffs that contained high simple carbohydrate levels and it seemed to help but not as much as I wanted it to help. Another visit to a GP was met with severe indifference. I could tell the GP didn't give a damn about my vague symptoms. I wanted to have my blood tested for diabetes and only barely managed to get that arranged. (Results were clean, nothing wrong)

Even when I explained to my GP just how tired I'd be after producing stool (To the point where I sometimes had to lie down because I'd be exhausted. This could usually be prevented by eating something right after, though.) I was assured that it was perfectly normal.

I also could never produce stool without it being sticky.. I always thought this was normal until I started my gluten-free diet so I never mentioned that to my GP.

I figured I'd just continue on my present course until I ended up in the hospital with an infection. The doctors there were stumped. They had no clue what was wrong and gave me all sorts of theories. One thing that they kept repeating was that the kind of infection I had, was only visible in people with an auto-immune disease. (No such thing runs in the family as far as I know and they didn't bother testing me for anything inherited because they were too busy chasing their own silly theories. They even had a bet going on whether or not it'd be a particularly nasty virus, I later on learnt. Coincidentally, this was also the last day of my life that I had faith in modern medicine.)

After being sick for about a month I suddenly got better and the hospital released me. Afterwards, they managed to identify the type of infection (Simple fungus you'll find any where, nothing special.) but were never able to tell me why a young healthy person would get infected like that. They pumped me full of all sorts of heavy antibiotics and other various medicine that turned out to be the wrong kind afterwards.

Once I got back home, I returned to my old near-sugar free diet and I noticed it just didn't work for me. I got very, very tired after eating and I had to look for alternatives. I ended up having no clue as to what to do. I seemingly couldn't eat anything until an acquiantance of mine that owns a food store told me I could very well be having a reaction to gluten.

I think the reason I suddenly was so oversensitive was due to the antibiotics that wrecked my stomach.

Wow. Quite the ephiphany once I tried out some gluten-free products. I wasn't tired after eating!

Dairy-products have oddly become more of a problem than they were before. That might also be because I started eating more of them as gluten-free products are expensive. However, I seem to be better able to cope with dairy products than when I first started my diet.

Now I'm living gluten-free for almost a year.

Still, I've never done this - challenge- I hear people speak of. My latest (and probably last) visit to the GP told me there were three possibilities:

1. Endoscopy

2. Blood test

3. Gluten-free living and then a test

I guess I should do the latter but I really do NOT want to go back to feeling the way I used to. I'm pretty sure I've been contaminated a few times because I recall ending up in an unexplainable heavy depression, a heavily rumbling stomach, the inability to focus and retain information properly, huge stool and most of all: a need to just go to sleep. All the symptoms I had before I started a gluten-free diet. I live with someone who isn't too keen on hygiene and it shows in food contamination. Most of the time, the measures taken are sufficient, though.

The first two options are probably no longer an option since I've been largely gluten-free for quite a while now.

That and I'm not going through an endoscopy. I've had a bronchoscopy when I was in the hospital and that was barrels of fun...

Oh, as you may have noticed; I am pretty long-winded. Sorry.

Hope someone takes the time to read it and posts their thoughts. I do realize that unless I get tested by a professional, I'll never really figure out what it could be but I think I can live with that. I'm willing to do the blood test but if it turns out negative, I'll just start doubting my own diagnosis.

All I can say is that ever since I switched to a gluten-free diet, it's been going so much better.

I even joined a fitness club, followed several courses in language and work-related materials and I find myself to actually be able to muster up the energy and willpower to continiously invest in such matters. During my teenage years, I'd be so extremely tired after 2 hours of school that I pretty much flunked out of everything I did.

Still, there's this lingering thought that I might be masking something else with my new diet?

What if it isn't gluten that I have a problem with?

And if it is gluten, what does +/- 25 years of living with a gluten-infused diet mean for my stomach and my body in general?

Why do I suddenly have a problem with dairy products?

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Celiac.com Sponsor (A8):

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Welcome to the forum and it sure does sound like your in the right place. To get tested for celiac you are going to have to do a gluten challenge and add it back in for a good 2 to 3 months and even then you could have a false negative. Many of us are not able to cope with the amount of time we need to be back on gluten if your systems react to it. And that reaction is pretty diagnostic in itself. The reason why you are having an issue with dairy could be either lactose intolerance or casien intolerance. Many of us have lactose intolerance until we are well healed but those that are reacting to casien usually can't add it back in. You could try going with low lactose cheeses like cheddar and yogurt or taking lactase tablets and see if that takes care of the issues or just drop dairy for a while and then add it back in and see if you still have issues with it.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi, and welcome. No need to feel alone; many of us here diagnosed what our doctors were unable to, and have had no testing. Feeling well is its own reward, and not all of us need the piece of paper with celiac written on it :) And the lactose intolerance is the final self-diagnostic bit. You think these things are all being caused by gluten, but gluten is actually overwhelming other responses and once it is removed we are able to recognize the others. Welcome to the club and feel right at home.


"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

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Welcome! I'm new to the forum too. :) I agree with ravenwoodglass. If you feel good eating gluten-free then don't bother getting put under. I was tested for celiac through blood work but came back negative. Makes sense because I'm not celiac but I'm gluten intolerant. I wish they would come up with blood work testing for gluten intolerance. The false positives are confusing! Check out www.enterolab.com This was started by doctors to give people like us an answer. The gluten testing might not be a good option for you because you've been gluten-free for a year but there are other tests. This is where I found out that gluten intolerant, dairy intolerant and do not carry the celiac gene. This is all done through stool samples and swabs. For those of you that don't think gluten intolerance testing isn't an option, there is!!! :) And you don't need a doctor's referral.

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you will find that you are very welcome here. And yours is a very well-written descriiption of what it is like to live with long-term undiagnosed Celiac/Gluten Intolerance. Don't get stressed about not being tested. Many people don't test positive and yet find that they absolutely must eat gluten free. I decided i didn't care if it was called Celiac or Gluten Intolerance or whether the Dr.'s believed I had it or not. The significant thing is that you are healing by eating gluten free. The dairy intolerance became a problem for me too after being gluten free for some time. I didn't want to have to give up dairy and believed I would not have to. Consequently, I was sick for a lot longer than I had to be even though I went gluten free one year ago. I too, went through the struggle of thinking it was sugar. Sugary foods are usually gluteny foods too, so if you think about it, it makes sense that when we minimize sugar we accidentally minimize gluten. I eventually learned a year ago that gluten was the real problem. You will be fine even if you don't test. The significant thing is you have learned that gluten makes you sick. I was tired, tired, TIRED most of my life. It took an extreme amount of energy to do basic living...and I slept away years of my life before I knew waht gluten poisoning can do to us. Rejoice in your new energy and new way of eating! There are many like you here on the board and we are just very happy to be able to control the symptoms by diet. One thing you could do for yourself even if you decide not to do the testing is get your vitamin levels checked and have your thyroid tested. Celiacs are often deficient in A,B,C,D,E,K,Iron,Calcium, Magnesium, Zinc and B 12. have your Dr. test your levels of the vitamins that they can test for and you might have more information to pursue your health. Thyroid Disease is very common in Celiacs too. In spite of not testing for Celiac, believing that I had it prompted me to ask the Dr. for a test for Hashimoto's Disease because I had read about the two auto-immune diseases occurring together. Indeed I have it, the antibodies are high though the TSH level is still registering as normal. Eventually the thyroid will "Burn Out" according to my Dr. My Dr. has agreed to monitor me for Celiac related deficiencies and secondary problems based on the fact that I have responded so well to the gluten free diet and was ill for many many years. Hopefully you will find an understanding Dr. as well. Even if you don't test postiive it is a good idea to follow up medically with what could be Celiac. I want to get and endoscopy done to ease my mind as to what damage might have occurred all those years of eating gluten. Not so much for testing for diagnosing Celiac, but to be sure I haven't developed the intestinal cancer assoiciated with long term undiagnosed Celiac. It isn't really common, but the chance is there, so don't rule out an endoscopy entirely. It can be helpful to ease your mind about these secondary problems. If I had insurance I would immediately do it for the information about how well the intestines are healing. But I don't feel strongly about needing an official diagnosis. The fact that I can stay awake for my life now...says it all.

Good luck to you and keep reading here. You are as welcome here as someone who has been officially diagnosed with Celiac. ;)

Healing is a matter of time, but it is sometimes also a matter of opportunity.


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Hello all,

Thanks for the posts! What you wrote strikes me as very familiar, Eatmeat4good.

I've got some insurance but it won't cover many of the things that we're discussing here.

I'll have to pick and match carefully or perhaps just postpone it until it's economically viable.

Based on what people have written in this thread, I'm compiling a list of diseases/problems I'd like to get tested for just in case. I'd have to have a chat with my GP about it and drop the ones that I consider too invasive.

I don't think not being taken serious will be a problem this time. Last time I left my GP's office, I was put in intensive care a day after! He took me very seriously after that happened. ;)

So far it'd be:

  • Casein (Lactose is sort of obvious already!)
  • Hashimoto's thyroiditis
  • autoimmune thyroiditis
  • Gluten blood test (Maybe I get lucky.)

Will keep an eye out in other topics as well.

I believe I have been tested for certain deficiencies in my blood when I was tested for the diabetes (Everything was O.K.) but I might add it to the list again to see if there are any changes. Besides that, I started eating a lot more fruit, nuts and vegetables ever since I switched diets to keep this diet interesting! Never felt so healthy before. Hah.

I guess that once the stomach has recovered, all sorts of problems can pop up? I must say I've had surprisingly few compared to what I've read here and I wonder if I'm in for any 'surprises'. A lot of you describe problems on top of simply being gluten-intolerant. Did these problems show after you switched and adjusted to a gluten-free diet?

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I just wanted to add my hello :) I'm new here too. I'm going through the testing process now, but am off gluten for the time being for a few reasons. My thread is in this section if you wanted to read about it.

I think the decision to go back on gluten for testing is a huge one. No one likes feeling sick, let alone intentionally making themselves sick for testing purposes! I suppose at the end of the day it depends how important an answer is to you. I can't even answer that for myself yet. But if I'm still having gluten withdrawals by the time it comes around I'll probably just do it because I feel crappy anyway.

I'm glad you're heading back to the doctor for testing on other things though. Good luck!

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