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amberleigh

Anyone Feel "fine" With celiac disease

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I'm still in a state of confusion about my celiac disease dx. My brief backstory...

-I had chronic D for about 8 weeks in 2001, had a colonoscopy, doc found nothing and dx'd me with IBS

-Immediately after the colonoscopy, I felt better. I took meds for IBS for awhile, but then just tried to regulate it by avoiding foods that I thought were triggers for me (things that made me gassy or bloated)

-Got chronic D again for about 6 weeks in June 2007, had a colonoscopy/endoscopy, dx'd with celiac disease (also had anemia and elevated liver enzymes)

-Again, the D disappeared after the scope (and I also went gluten-free at that time)

So my theory is that I had celiac disease back in 2001 but b/c they didn't do a blood test for it or an endoscopy, they didn't find it...which means I lived for 6 years WITH celiac disease and eating gluten, and other than some occasional upset tummies, I was fine.

Is it possible that celiac disease only "flares up" under times of stress (the first time, I was in grad school, away from my family, and planning our wedding...and the second time, I had just stopped nursing my son, who is our third child under the age of 2).

Thanks for reading this if you made it through. If you have any advice at all, I'd truly appreciate it. I guess I'm still sort of in denial about this...especially with the thought that I lived a "normal life" for 6 years even with celiac disease. :(

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I think my celiac disease symptoms peaked at certain times in life with the worst case after the birth of my second child. That's when I started getting some bouts of D. However, after being gluten-free the first six weeks and now that I'm gluten-free 8 mos., I can see how much better I feel. I never complained about being fatigued to the doctor because I was so used to feeling that way. I was relieved (and overwhelmed) when I started the gluten-free diet. Now I am so thankful to feel better.

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I totally feel the same way, I have episodes as I like to call them, sometimes maybe twice a year at the most and I was DX with IBS. All the while eating gluten since I felt better on a bland diet... lived off of Rice crisy squares...which I am really going to miss :( This all started about 5 years ago, after my wrist surgerys for Tendonitis, I had 3 of them and after the last time I started getting ill. My first pregnancy was great...I ate alot of grains and never got sick once!!! I then got a really bad episode, actually I got the Norwalk and of course the D for 6 whole weeks...it was horrible. Then I went to my specialist whom first said I had a twisted bowel, then IBS and finally now with my Biopsy results as severe celiac. So its been a long road, and since having my second baby they have been alot worse.

I am never sick so I dont know how I am supposted to feel when I am gluten free, but I have been Gluten Free except for hidden gluten for months, so this is getting easier. I just need to figure out what the hidden Glutens are and I should be fine. I think that maybe there are severe celiacs who get reactions immediately and then some that hardly get symptoms at all, I am shocked that my Villa is completely flat as I dont feel anything or any different. I am feeling like I have more energy?? still tired but I young children so I have a reason to be tired.

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GI wise I had years when the only time I had gut symptoms that were severe were primarily during the two weeks before my period. I had a very rumbling tummy since childhood on a daily basis, but I thought that was normal. It's not as my tummy is really quiet now and only growls at me when I eat something I shouldn't. It wasn't until the last 15 years before diagnosis that I got daily D, the last 5 years it was constant unless heavily medicated. My neuro symptoms were there consistantly since childhood though, the episodic depression, OCD and balance issues and nerve damage were there and slowly getting worse since age 4, those were a constant but were never addressed other than being thought to be PMDD, or part of some depressive disorder that they wanted to throw meds at. I think once many of us a gluten-free we realize that celiac is much more than a tummy disease, it just isn't recognized, but gluten-free a lot of things we thought normal aren't and we feel better than we have since we were little.

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Hi amberleigh,

I kind of feel the same way you do about celiac. I was just dx'd a month ago and keep looking back trying to piece it all together. At first I didn't really think I had any symptoms, but then I find that I did have some different things going on a different times in my life.

I'll give you a little of my background. I've only started having stomach pain, severe grumbling, severe constipation, and severe burping since May. The burping symptom started maybe a year ago but wasn't that bad until May. I've always had constipation just before my menstrual cycle, but attributed that to hormonal changes. Fatigue has been a problem and so had insomnia, but I just thought that was part of having children. I can also remember when I was real young learning was so easy. I could remember anything the first time around. Never had any learning issues, but as I got older I started to lose focus and found it harder and harder to concentrate on anything. I'm not sure when this happened exactly, but I think it was after my father's death which was when I was 14.

I thought I just developed celiac disease since May. But my follow up visit to my GI Doctor was this past Tuesday and he said due to the extent of the damage, I've had it "forever" and it was a classic case. That totally shocked me. None of my symptoms were ever obvious or very severe until 3 months ago.

So to answer your question, I think celiac is there all the time but sometimes the symptoms are so subtle we ignore them and learn to live with them. It also seems to be slowly progessive, at least in my case. Often the symptoms vary so much with different celiacs.

Just try to hang in there and definately stick to the diet. With time it will be easier for you to accept. You can still live a 'normal life' just with a different diet. :)

I think what ravenwoodglass said sums it all up nicely:

I think once many of us a gluten-free we realize that celiac is much more than a tummy disease, it just isn't recognized, but gluten-free a lot of things we thought normal aren't and we feel better than we have since we were little.

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All the while eating gluten since I felt better on a bland diet... lived off of Rice crisy squares...which I am really going to missve a reason to be tired.

Goldy, this is OT, but Nature's Path makes a cereal called "Crispy Rice" that is gluten free. You could make Rice Crispy Squares from that.

Rho

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Amber - just because you "felt" fine doesn't mean that the damage wasn't being done. I think there are quie a few Celiacs that are asymptomatic or that medication covers their symptoms. My daughter's symptom was acid reflux that got better with medication but didn't go away. At one point, they were talking about doubling her dose - how much damage would we have done if we had covered up her one and only symptom with an easy (and generally accepted) acid reflux pill. My husband has been on acid reflux medication for about 9 years (and a pretty strong one at that). He has had acid reflux issues for about as long as I have known him (19 years). Guess who's getting some blood testing done? If anything shows up there . . . I'm going after my FIL who is ALSO on acid reflux medication for who knows how long.

goldyjlox - make your rice crispy treats with Erewhon's Crispy Brown Rice Cereal.

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goldyjlox - make your rice crispy treats with Erewhon's Crispy Brown Rice Cereal.

Goldy, this is OT, but Nature's Path makes a cereal called "Crispy Rice" that is gluten free. You could make Rice Crispy Squares from that.

He He . . . Great minds think alike . . . or maybe it's two moms who refuse to give up rice crispy treats. :P

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I didn't know that I had a problem with gluten. I went gluten-free to support my dd (who had obvious and severe GI symptoms) and then when I cheated for a whole week (on vacation) I got SICK! I was very surprised. That's when I started investigating gluten as a culprit in my own health. I have some very subtle symptoms that have gone away on the gluten-free diet - gastric reflux, excessive belching, head fog, achy joints. I just thought these things were my norm before, and lived with them. One slightly alarming thing, though - I'd developed slight numbness and tingling in my extremeties about a year before going gluten-free with my dd....and since my big week-long glutening, that seems to be worse. It makes me wonder what was in store for me if I'd kept consuming gluten. Even if you don't have obvious symptoms, damage can still be happening in your body - and eventually, it will become bad enough to be symptomatic. I now consider myself lucky to have "stumbled" across the fact that I am indeed intolerant of gluten.

Rho

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My DD is only 7 and she was just diagnosed she only showed symptoms once in awhile. She may have a bout here and there but nothing reg. I had seen little signs all her life and even said when she was a few months old that I bet she is going to be the kid with Ulcerative Colitic like my DH had. Well thankfully she didn't ahve that but she does have Celiac. I feel awful taking so much awy from her when her symptoms seem mild BUT I know we ahve to and in the end she will be so much better for it. When I asked her d

r about is in normal for some one to barely show any symptoms he said YES! that is one of the reasons it is so hard to diagnose this disease!

I feel very thankful I got her diagnosed in less then a month and not the many yrs i hear so many people go through.

Good luck to every one!

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Looking back I was having "gut" issues as much as 10 years before my Dx in May 05. One reason I think it was so hard for me to pinpoint the cause was that I always liked naturally gluten-free food. I might not eat much bread etc. for days at a time so my body was in a constant state of inflammation/recovery. This made me think I was always getting some type of virus and it would simply go away. I was never really sick just underweight. Toward the end prior to my diagnosis I was losing weight so badly that I would eat more and more bread trying to gain it back and this just made things worse. I never heard of Celiac Disease until about a week before my Dx. This is why I feel Celiac is so hard to diagnose. A person could start to "avoid" things like pasta thinking the sauce is the issue when in fact it is the noodles causing the problem. It is only when we realize (through knowledge of Celiac or a "positive" diagnosis of the disorder) that we go gluten-free for good and see the end result. I don't care how many tests you run trying to diagnose gluten intolerance/Celiac, the only test that counts is whether or not you respond to the diet. Fortunately in "almost" all cases the person responds and starts to recover.

Tom

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Celiac is an auto-immune disease and as far as I know, it's a common trait of auto-immune diseases that they can flare up at times and then lay low at times again. Stress would be a typical trigger for a flare up...

Pauliina

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I know exactly what you mean. I had what I would call flare ups when I was growing up. I recall when I was about 5-6 having diarrhea and being diagnosed with "Gastroenteritis". Then when I was in high school I had diarrhea A LOT and remember taking Kaopectate almost as part of my daily diet! Then my GI symptoms seemed to stop in my 20's. Except..... I was diagnosed with osteopenia. But NO ONE made the connection or asked the question "Gee, why would a 20 year old have Osteopenia?" They just said "Hmm, that is odd so make sure you take Calcium supplements!"

I have very real fantasies of suing my pediatrician for failure to diagnose.

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Yes, I have had flare-ups too but mostly not obvious intestinal issues, other than the big "C". Even that wasn't that bad because I didn't have hard stool, just didn't go very often. I got worse after going gluten-free, but it's like my system is waking up and also I am more aware of the abdominal symptoms.

I think it is really important to remember what has been said--the damage is occurring whether we have symptoms or now. Eventually we are going to pay for it big time if we don't stay gluten-free.

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I think that there are "subsets" of celiac, which manifest themselves in different ways.

I'm convinced that fibromyalgia is one such subset, for example. If you look at the symptoms list, it's identical to those of more "advanced" celiac (celiac that has gone undiagnosed for years), but it does seem to come in flares. And very, very few if any doctors, even the supposed experts in fibromyalgia, bother to test for celiac in fibro patients. Instead, they throw meds at them--arthritis meds, painkillers, sleeping meds, antidepressants, etc. In other words, they do their best to mask the symptoms, and make no effort whatsoever to find the cause of the symptoms.

Ditto for things like reflux, as mentioned above.

I've had the reflux since my early teens, Hashimoto's since my mid-20's, and MILD intestinal symptoms and MILD joint pain since my late 30's,but it took what I believe to have been a really obvious DH rash (but it was unfortunately not officially diagnosed)to get me researching on the Internet. If I had waited for the doctors to suspect gluten as the culprit, I'd be waiting for the next century. :ph34r:

Interestingly, the increase in my symptoms coincided with an increase of gluten in my diet. Duh!

(I suppose I could blame Rachael Ray and all her yummy and easy bread and pasta dishes on TV (which prompted the increase in gluten), but now I just make them gluten-free and they are still yummy! I mean, Yum-O!)

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