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Constipated On gluten-free And Diarrhea After Stopping gluten-free
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Hello All,

I'm thankful to have found a forum that appears to be active. I was just tested for celiac via a biopsy of the small intestines. I was having some pretty severe heartburn so my Dr did an endoscopy and did a biopsy for hpylori as well as celiac.

I do have a question though.

I tried a gluten free diet about 2.5 months ago. I was going on this diet because I had some very odd symptoms that appear to be fibromyalgia. I started the diet and stayed on it only for 2-3 weeks. While on this diet, my intestinal tract got so messed up I was bloated and constipated (mind you, I have always had problems with IBS and such), but this was terrible.

I decided to go off the diet and afterwards, I have had diarrhea every morning when I awake two to three times immediately upon waking up. I have not had a "normal" bowel movement since going off the gluten free diet. This has been for about 6 weeks.

I am following up with the gastroenterologist this Thursday, but I am curious if you all know if these symptoms sounds like celiac or gluten intolerance??

I just wonder WHY is my intestinal tract so messed up since going off. And the reason I originally stopped the gluten-free was because I was soooo extremely bloated and constipated.

I'm wondering if it was possibly due to the soy products in so many gluten free foods and maybe that was why I was bloated and constipated??

Does this sound like it could be a gluten sensitivity?? Wondering if I should try the gluten-free diet again??

Thank you for your thoughts and opinions.

Susan

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Many people experience withdrawal symptoms during the initial stages of going gluten-free. It could have been that you went back on the gluten just as your body was starting to adapt to not being on it. If it ended up screwing with your intestinal microbes then it'll be a while before those get back in proper arrangement.

If you do decide to try gluten-free again, DO NOT EAT "GLUTEN-FREE PRODUCTS" DURING THE INITIAL PHASE. By "gluten-free products" I mean gluten replacement items like gluten-free breads/pastas/baked goods. These products have to use a lot of additional ingredients to get a finished product that anywhere remotely resembles gluten and all of these additives can cause their own health problems. Additionally, because there are normally multiple additives in each product it is hard to pinpoint exactly which one is causing problems. These sort of items are really best left until your body gets into a more stable situation a month or two into the diet when you can slowly introduce them into your diet and see how your body responds to it. It's just way too much new stuff to tax your body with right in the beginning of the change.

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Many people experience withdrawal symptoms during the initial stages of going gluten-free. It could have been that you went back on the gluten just as your body was starting to adapt to not being on it. If it ended up screwing with your intestinal microbes then it'll be a while before those get back in proper arrangement.

If you do decide to try gluten-free again, DO NOT EAT "GLUTEN-FREE PRODUCTS" DURING THE INITIAL PHASE. By "gluten-free products" I mean gluten replacement items like gluten-free breads/pastas/baked goods. These products have to use a lot of additional ingredients to get a finished product that anywhere remotely resembles gluten and all of these additives can cause their own health problems. Additionally, because there are normally multiple additives in each product it is hard to pinpoint exactly which one is causing problems. These sort of items are really best left until your body gets into a more stable situation a month or two into the diet when you can slowly introduce them into your diet and see how your body responds to it. It's just way too much new stuff to tax your body with right in the beginning of the change.

Thank you very much for your reply. Too bad I didn't come on this forum before I started gluten-free. Great advice and when I go back on gluten-free, I will definitely go with the recommendations you have listed. I'm wondering if that is why I was also gaining weight on the gluten-free diet (all the processed food, etc).

Thank you kindly.

Susan

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Could these results have anything to do with celiac?

elevated CRP (C Reactive Protein)

elevated level of CH50

elevated ACA (anticardiolipin antibodies)

ANA (positive somtimes - negative right now)

I'm still waiting on my biopsy from the endoscopy.

Thank you

Susan

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Elevated levels on those sorts of tests certainly point straight towards autoimmune behavior. Unfortunately, the longer celiac disease goes untreated, the more significant chance you have of developing additional autoimmune conditions. All this fun stuff ends up causing self antibodies and severe systemic inflammation. Best of luck on getting some clear results.

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Excellent advice from WheatChef :)

Before going gluten-free I never ever had issues with constipation, I always had my stomach working the other way, but afterward I started having issues with const. I figured it might be that my intestines are so used to d, that they need to learn how to work normally again :P

Of course, it could definitely be all the processed gluten-free stuff I was eating. Corn pasta, maize porridge, rice biscuits etc. So I'd second the advice to stay with non-processed whole foods for a while until everything calms down. Take note of what foods you were eating more of while gluten free - such as soy like you mentioned.

I also find that nowadays an accidental glutening can cause const for a few days before the d begins. So perhaps you were getting traces of gluten accidentally (cc from utensils, toaster etc)?

** I really think the fact that you're now getting D while on gluten, whereas you were "fine" before suggests gluten intolerance or celiac disease, by the way :) Lots of people become more sensitive to gluten after going gluten-free. **

Also be aware that many celiacs/gluten-intolerants are sensitive to soy and dairy as well. Once you went gluten free, your stomach might have started reacting to some other problem food, that was "masked" while you were on gluten.

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Thank you SO much. You all are most helpful and I really do appreciate it. I get my biopsy results back today from the gastro. I do have one more question, if you are "gluten intolerance", can that still cause serious issues and mess up the blood (abnormalities within the blood) and cause inflamation??

Thank you most kindly.

Susan

Excellent advice from WheatChef :)

Before going gluten-free I never ever had issues with constipation, I always had my stomach working the other way, but afterward I started having issues with const. I figured it might be that my intestines are so used to d, that they need to learn how to work normally again :P

Of course, it could definitely be all the processed gluten-free stuff I was eating. Corn pasta, maize porridge, rice biscuits etc. So I'd second the advice to stay with non-processed whole foods for a while until everything calms down. Take note of what foods you were eating more of while gluten free - such as soy like you mentioned.

I also find that nowadays an accidental glutening can cause const for a few days before the d begins. So perhaps you were getting traces of gluten accidentally (cc from utensils, toaster etc)?

** I really think the fact that you're now getting D while on gluten, whereas you were "fine" before suggests gluten intolerance or celiac disease, by the way :) Lots of people become more sensitive to gluten after going gluten-free. **

Also be aware that many celiacs/gluten-intolerants are sensitive to soy and dairy as well. Once you went gluten free, your stomach might have started reacting to some other problem food, that was "masked" while you were on gluten.

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I do have one more question, if you are "gluten intolerance", can that still cause serious issues and mess up the blood (abnormalities within the blood) and cause inflamation??

It certainly can. Technically celiac disease, which is defined by blunted microvilli in response to gluten exposure, is possibly merely a symptom of gluten intolerance (immune system response to gluten exposure). Gluten related autoimmune attacks (gluten intolerance) in places such as the brain, lungs and skin have been observed in patients even without the presence of blunted microvilli (celiac disease). This is where the problem of using the "gold standard" of diagnosis (biopsy) starts to get confusing. If the definition of celiac disease is solely isolated to the intestine, who really cares about whether you have celiac disease or not when you can have other major organs being eaten by your body regardless.

The above combined with a relatively significant false-negative rate in biopsies are reasons why a lot of people on these boards are more concerned with how your health responds in regards to gluten consumption as opposed to the tests.

Biopsies however can help show possible alternative causes to digestive issues opposed to celiac/gluten intolerance that can share many of the same symptoms but require different forms of treatment.

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    • She (your PCP)  can order a celiac blood panel.  It might not be a complete panel, but it's a start.  Any medical doctor can order one.  A GI is needed for the endoscopy (ulcers, Celiac disease, h.pylori, etc.), HIDA scan (gallbladder)  or colonoscopy (IBS).   Since you just saw her, email/call/write a letter and ask her to order (lab) the celiac panel.  You could go to the lab before or after work.  Pretty easy!  
    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
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