Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Constipated On gluten-free And Diarrhea After Stopping gluten-free


chucksusanandgrace

Recommended Posts

chucksusanandgrace Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



WheatChef Apprentice

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.

chucksusanandgrace Rookie

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

chucksusanandgrace Rookie

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

WheatChef Apprentice

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.

Marz Enthusiast

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.

chucksusanandgrace Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



WheatChef Apprentice

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748

    Rachel Wilson
    Newest Member
    Rachel Wilson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.