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Celiac With Chroic Diahrea

Ally2005

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Ally2005 Apprentice
Ally2005
Posted

Hi I am getting very frustrated. I am 42 and was diagnosed a month ago via a biopsy. I have been gluten-free for a month now and have noticed only small changes in my bowel habits. Previous to the diet, I was having severe diahrea at least five times a day. After 2 weeks, they decreased to 2 and were not near as watery. My Gi said I shouold have a normal bm in about a month. I am no where near having a normal bm. Is there something wrong? I went undiagnosed for 10 years. I know from the posts on this site that recovery is variable, depending on your age and the severety of the damage, but I wonder why my GI would tell me this especially since my damage was severe - stage three. If anyone has had asimilar situation could you please tell me how long it took you to go from having chronic diahrea to a normal bm. I would appreciate any input as I am getting consummed by this.

Ally

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darlindeb25 Collaborator
darlindeb25
Posted
:( the GI is only guoting what he thinks he knows--there is no average time frame for us--if you are feeling better, then you know it is working--it takes time to get the poisons out of our systems---some celiacs need to go dairy free until the villi repairs itself---are you sure you are totally gluten free--are you checking the ingreds on your shampoo, soaps, lotions, perfumes, make-up, medicines--any chance of cross contamination---just keep at it--one month is a very short time--just give yourself more time to heal--otay---deb
mommida Enthusiast
mommida
Posted

I agree with what Deb has told you.

There is a chance that you are also sensitive to other ingredients. I would suggest a food journal. Keep track of all the ingredients, stomach pain, and b.m. There is a lot of sources for information that debate gluten free status of products. I had to switch to a brand of vanilla that is labeled gluten free.

Laura

anerissara Enthusiast
anerissara
Posted

I'm in the same boat...I've been gluten-free since mid January, and before then I was having D 3 to 5 x per day, always watery...now I'm having it 1 x per day (back to 3 x if I've been glutened...which has happened at least 3 times that I know of...oops!). However, I have had 4 bm's that I'd consider "normal"...that is, not D at least, which is 4 more than I'd had in the previous year. It's very frustrating, because I thought after a normal one that things would just be smooth sailing from there on out...only to regress again the next day :huh:

I will say, though, that the bloating and gas and stomach pains have decreased dramatically since going gluten-free. My skin is generally in better shape, too. I just wish I didn't keep messing up because it seems like each time I accidentally eat gluten I get set back for a week :( I guess I should go on a chicken-and-veggie diet for a month straight and see if things get better faster.

Hang in there, and keep us posted on how things are going!

KaitiUSA Enthusiast
KaitiUSA
Posted

I never had that problem with celiac but they can't put a time table on when symptoms will clear up. Some peoples symptoms clear up sooner and others later. My symptoms started getting alot better by month three and then by a few months after that I was back to normal again. Make sure your products are gluten free such as lipsticks/cosmetics, shampoos,lotions, toothpastes and other things mentioned previously. Gluten can be hidden under many ingredients as well. https://www.celiac.com/st_main.html?p_catid=12

This is a list that will help as a guideline on what ingredients are safe and not safe for celiacs.

Feel better soon and hang in there :D

ianm Apprentice
ianm
Posted

It just takes time. It was about three months before I felt better and about a year before I was felt healthy. You've come to the right place though and I have learned a lot in the few weeks I've been here. You will make mistakes and there will be setbacks but keep at it and you will be glad you did.

Ianm

Carriefaith Enthusiast
Carriefaith
Posted

Hi, I have been gluten-free for over a year now and I am still suffering from chronic annoying diarrehea. I have been told that I have IBS in addition to Celiac... How fun <_< I am also being tested for a few other things as well such as pancreatic insufficiency and diabetes...

It is important to make sure all your food/products are 100% gluten free and to make sure you aren't allergic to other foods, especially dairy products. Since you have had extensive damage... give yourself a few months to feel better.

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Ally2005 Apprentice
Ally2005
Posted
  • Author

Thanks for your input and reassurance. I am curious though, when one has celiac disease what constitutes a "normal" bm? My system has been so messed up for so long I don't know if I know what to look for! As of today, I am going on a whole foods diet... meat, fish, poultry, fruits, veggies, and whole grains. I'll let you all know how it works.

Ally

cdford Contributor
cdford
Posted

Believe me, you will know normal when it finally happens! I had alternated between D and Constipation all my life. I was ancient (okay, only 45) when I was diagnosed and it took several months for things to straighten out. Even once I began to have what I now know as normal BMs, it was much longer before they were that way consistently. For a while I was just happy that I no longer vacillated to quite such extremes.

cdford Contributor
cdford
Posted

Upon using the back button to get back to my original search, I realized that I never answered the question. Normal is when it occurs without cramps, water spouts, or feeling as though you have delivered a baby. Normal is sensing the need to go and getting to the bathroom without running. Normal is being relatively certain that when you get up and wash your hands you can actually leave the bathroom for a while. Normal is going daily (as opposed to 5 times a day or every 5 days). Normal is soft but formed and a color usually associated with earth (varying from light brown to dark green). Normal is not having any itching or blood. You get the picture. Any further description would get into the poor taste category.

Hope this helps.

Ally2005 Apprentice
Ally2005
Posted
  • Author

Okay, that helps me a lot. I am soooo glad you shared about the lenth of time it took you to have a normal bm and on a consistant basis. I was concerned that there was something wrong with me. I will be much more patient. My symptoms are improving gradually (gi symptoms) and I need to hold on to that. I guess I associate a normal bm with complete recovery of the damage.

Ally

luvs2eat Collaborator
luvs2eat
Posted

I only had chronic diarrhea for about 2 months before I was diagnosed. It took a whole year of a scrupulously gluten-free diet before I decided my BMs were back to "normal."

If there's one thing I've learned from all the reading I've done on this board... is that "normal" is a relative term and all of our symptoms and reactions are so different.

Hang in there!

Guest eatinglotsofsushi
Guest eatinglotsofsushi
Posted

I am about 3 weeks post-diagnosis and I had daily diarrhea for 25 years until the ENG revealed significant celiac disease damage to my intestines. I have had one minor bout since I went gluten-free but that could have been a 'bug' or some cross-contamination. My wife has been creative with corn and rice pasta, veggies, meats, and her new Breadman so I have not been hungry once. As a matter of fact, my appetite seems to have lessened since I went gluten-free. Fortunately I love tapioca so that takes care of my 'sweets' needs.

I have been fatigued and have not slept through the night since I went gluten-free but I accept all this as bodily adjustment to the new diet.

It is a godsend to be free to go places without worrying about where the closest toilet is. In general, I'm feeling 100% better. Now, just for a good night's sleep....

mgglutenfree Newbie
mgglutenfree
Posted

Hi, I'm new to this, though about 2 months gluten-free, well, trying to be. I haven't looked at my cosmetics (any particular line that can be recommended?). I have to say that I have an almost emotional reaction and a well up of tears when I read the forum as I don't feel as crazy as my family and friends are starting to act like I am about trying to live gluten free and being so tuned into my bodies reactions. My stools improved soon and that was a relief to not have a 8 -10 bm's a day. What is has been strange is that while my energy and my bowel has improved, I still have times I feel flu like for no clear reason, or terrible gas. Seems like I have developed sensitivites to many other foods like milk and soy. for some reason I can't eat humus, which I love, without major gas and pain. Is this just how it is? I felt so incredibly good, like a high, about 3 weeks gluten-free, and now I feel like I am struggling again though I am trying to be vigilant about being gluten-free. Is this just how it goes?

anerissara Enthusiast
anerissara
Posted

mgglutenfree...I had the same reaction, just felt wonderful about 2 or 3 weeks into it and felt better than I'd felt in years, but now I'm almost 3 months into things and I don't feel nearly as good. It seems like I just start feeling better and get hit with hidden gluten, a virus, or some other problem that sets me back for a week. Sigh.

KaitiUSA Enthusiast
KaitiUSA
Posted

If you haven't checked other things such as lipsticks, toothpastes, lotions, et you could still be getting a bit of gluten in your system.(for makeup the whole bare escentuals line is gluten free and alot of burt's bees is gluten free) It takes some time for all symptoms to go away ..it took me 3 months to get alot better but a few more months to get back to normal. Hang in there it'll get better with time :D

mgglutenfree Newbie
mgglutenfree
Posted

Anerissara,

That sounds like my life. I hope it does get better, even if not the initial high we felt, though that would be so great. It made me wonder how one would have to eat and live to feel that way all the time. Saw my internist the other day and she said it takes about 4 mths for the cells to turnover in the body so may not feel full effect untill then. Spring in Kansas aggravates the histamine response as well.

Do others in the forum take antihistamines for food reactions?

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