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What Is Wrong With Me?

SaraLynn

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SaraLynn Newbie
SaraLynn
Posted

Hi,

I am brand new to this forum, I have been reading a lot of the postings, but never posted anything myself. Anyway, I have been suffering from "something" for about 6 years now, but I'm still not sure what that "something" might be. (I am only 22 years old!) I have severe constipation and the only way I can get relief is to overdose on laxatives (which I take everday) - then I have D. I also have severe bloating and horrible pains. Within the past year or so, I have also become very nauseas and have really bad indigestion. I have been to a lot of doctors, GI's included and each seems to be more perplexed than the other. They all told me that I have IBS and pretty much just to eat more fiber - which makes me feel worse! One doctor even told me that my system was just slow and that I should just eat more fiber and I would be fine. How many 22 year olds do you know that have such a slow system that they don't even go to the bathroom? I have gone up to 2.5 weeks without going - finally resorting to laxatives.

Anyway, I did have a blood test for Celiac's a couple of years ago and they came back just slightly elevated (I think it was an antibody test), but when the doctor did a biopsy of my small intestines, he said there were no signs of damage. So, he said that I didn't have Celiac's - end of story. Now, 3 years later, I am with a brand new doctor and we were reviewing my file and she asked if I had ever been tested for Celiacs. I told her yes, so she called for a copy of the test results. My new doctor claims that the other doctor didn't perform the biopsy correctly - she said that the doctor only did 2 biopsies, when he should have done something like 7 - is this correct?

My new doctor suggested I try something and go on a gluten-free diet, so for about a month now I have been gluten-free (at least as far as I know). However, I haven't really seen any positive results. After about a week I had about 2 days where I feld absolutely great. I even had a semi-normal, formed BM, which I hadn't had in at least 5 years. But after those 2 days, I have felt just awful. I am still very nauseas and still have severe bloating. Is this normal?

Can anyone help?? :(

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loraleena Contributor
loraleena
Posted

Biopsies can be wrong. I would get a stool test by Enterolabs. Also you could just try the gluten free diet, and see if it helps. If you reintroduce it and you get worse, then you have your answer.

aikiducky Apprentice
aikiducky
Posted

Welcome! :)

From what I've read here, constipation often seems to be the more stubborn one to go away, compared to D. So it might be good to just go on for a bit longer.

Also, do read this forum about all the tips about hidden gluten and cross contamination, thing is, the longer you are gluten free, the more sensitive you get to it, and "almost gluten free" won't do the trick.

Third, many people have said that they first felt better on the diet, but then had a period where they felt worse, before they finally started getting really better. I don't know why this happens but it seems to be very common.

Fourth, you might be sensitive to some other foods besides gluten. Dairy especially is very constipating, so if you happen to have a problem with it, only gluten free isn't enough. You could try being completely (as completely as with gluten) dairy free and see if that helps.

Pauliina

jerseyangel Proficient
jerseyangel
Posted
Hi,

I am brand new to this forum, I have been reading a lot of the postings, but never posted anything myself. Anyway, I have been suffering from "something" for about 6 years now, but I'm still not sure what that "something" might be. (I am only 22 years old!) I have severe constipation and the only way I can get relief is to overdose on laxatives (which I take everday) - then I have D. I also have severe bloating and horrible pains. Within the past year or so, I have also become very nauseas and have really bad indigestion. I have been to a lot of doctors, GI's included and each seems to be more perplexed than the other. They all told me that I have IBS and pretty much just to eat more fiber - which makes me feel worse! One doctor even told me that my system was just slow and that I should just eat more fiber and I would be fine. How many 22 year olds do you know that have such a slow system that they don't even go to the bathroom? I have gone up to 2.5 weeks without going - finally resorting to laxatives.

Anyway, I did have a blood test for Celiac's a couple of years ago and they came back just slightly elevated (I think it was an antibody test), but when the doctor did a biopsy of my small intestines, he said there were no signs of damage. So, he said that I didn't have Celiac's - end of story. Now, 3 years later, I am with a brand new doctor and we were reviewing my file and she asked if I had ever been tested for Celiacs. I told her yes, so she called for a copy of the test results. My new doctor claims that the other doctor didn't perform the biopsy correctly - she said that the doctor only did 2 biopsies, when he should have done something like 7 - is this correct?

My new doctor suggested I try something and go on a gluten-free diet, so for about a month now I have been gluten-free (at least as far as I know). However, I haven't really seen any positive results. After about a week I had about 2 days where I feld absolutely great. I even had a semi-normal, formed BM, which I hadn't had in at least 5 years. But after those 2 days, I have felt just awful. I am still very nauseas and still have severe bloating. Is this normal?

Can anyone help?? :(

Hi and welcome! Glad you found us :)

Your new doctor is very sensible--and is correct that not enough samples were taken for your biopsy. A positive biopsy can rule this in, but a negative one can not rule it out.

Actually, you did see a positive result--it was just short-lived! It is very common for healing to be uneven--especially in the beginning.

The first thing--are you absolutely sure that you're completely gluten-free? This means everything you eat and drink (of course), but also your personal care products, toothpaste, makeup, etc. Also your vitamins and any medicines you take. You need to be aware of cross contamination--a separate toaster, new wooden utensils and cutting boards, pots and pans that can be scrubbed out thoroughly. Ant scratches in a non-stick pan can harbor gluten.

It's also a good idea to not eat in restaurants for a few weeks, until you get the hang of the diet, and are feeling better. The same goes for eating at someone's house. You can still go, but bring your own food.

Sometimes what happens is, we become extremely sensitive to smaller amounts of gluten.

Let us help you--any questions you have about the diet, specific ingredients, recipes, dealing with loved ones--someone here has had experience!

SaraLynn Newbie
SaraLynn
Posted
  • Author

thank you for all your comments. I have tried to go totally gluten-free, but every once in a while I find out I have eaten something with gluten. I have checked my toothpaste, makeup, etc. and I am pretty considerate when it comes to CC.

As far as milk goes, I have heard that it can be very constipating as well. I really don't drink or ingest many dairy foods (except yogurt), but I know that the whey and caessin can be hidden in many things like just like gluten is.

It really makes me feel better that others have had a up and then went back down. I was thinking since I still feel pretty bad, I am not on the right track. I am pretty certain, since I am so new to this diet, that I am still doing a lot of things wrong and probably still ingesting gluten somewhere sometimes by accident.

Thanks for your help!

daffadilly Apprentice
daffadilly
Posted

Please consider giving up ALL dairy. Also eating out at the beginning is very risky, did you know that if you order a grilled chicken breast that not only could it be cross contaminted on the grill & cutting board, but that almost all restaurants coat the chicken with a grill base - yep it all contains gluten, because gluten tastes good !!!

also you need to get rid of your old cutting board, wooden spoons & the like...

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