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

Gluten Free & Still Having Gi Troubles


BrookeT

Recommended Posts

BrookeT Apprentice

Hello,

I was diagnosed with celiac 5 months ago and have been strictly gluten free and eliminated dairy as well, although I have it occasionally in processed foods. (I don't drink milk or eat cheese but I sometimes eat a lactose free organic plain yogurt.) All my supplements say they are gluten free on the bottles and I am careful about toothpaste, shampoo, lotion, lipstick, etc. Do I have to worry about cooking oils such as olive oil & canola oils being cross-contaminated? Oils & spices are the only things I can come up with as question marks. I had Marsh 3 severe damage so I know my healing will probably take longer than most. I have had some improvements with my anxiety, bloating, pain & fatigue, but I still have diarrhea/loose stools & constant stomach noises (rumbling, gurgling, etc.) which I've had since before diagnosis and it has not subsided. It gets worse right before my period. I have not lost any weight, which is amazing to me. Has anyone else with celiac experienced ongoing diarrhea after being gluten free? I feel like I will never have a normal b.m. again. Is it just going to take more time?

Any insight would be appreciated.


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



Celiac.com Sponsor (A8-M):



Holly4 Rookie

Hello,

I was diagnosed with celiac 5 months ago and have been strictly gluten free and eliminated dairy as well, although I have it occasionally in processed foods. (I don't drink milk or eat cheese but I sometimes eat a lactose free organic plain yogurt.) All my supplements say they are gluten free on the bottles and I am careful about toothpaste, shampoo, lotion, lipstick, etc. Do I have to worry about cooking oils such as olive oil & canola oils being cross-contaminated? Oils & spices are the only things I can come up with as question marks. I had Marsh 3 severe damage so I know my healing will probably take longer than most. I have had some improvements with my anxiety, bloating, pain & fatigue, but I still have diarrhea/loose stools & constant stomach noises (rumbling, gurgling, etc.) which I've had since before diagnosis and it has not subsided. It gets worse right before my period. I have not lost any weight, which is amazing to me. Has anyone else with celiac experienced ongoing diarrhea after being gluten free? I feel like I will never have a normal b.m. again. Is it just going to take more time?

Any insight would be appreciated.

I just learned about Candida and wonder if you may have a yeast problem?

willabec Contributor

Hello,

I was diagnosed with celiac 5 months ago and have been strictly gluten free and eliminated dairy as well, although I have it occasionally in processed foods. (I don't drink milk or eat cheese but I sometimes eat a lactose free organic plain yogurt.) All my supplements say they are gluten free on the bottles and I am careful about toothpaste, shampoo, lotion, lipstick, etc. Do I have to worry about cooking oils such as olive oil & canola oils being cross-contaminated? Oils & spices are the only things I can come up with as question marks. I had Marsh 3 severe damage so I know my healing will probably take longer than most. I have had some improvements with my anxiety, bloating, pain & fatigue, but I still have diarrhea/loose stools & constant stomach noises (rumbling, gurgling, etc.) which I've had since before diagnosis and it has not subsided. It gets worse right before my period. I have not lost any weight, which is amazing to me. Has anyone else with celiac experienced ongoing diarrhea after being gluten free? I feel like I will never have a normal b.m. again. Is it just going to take more time?

Any insight would be appreciated.

i have been gluten-free for 9 years and recently just got diagnosed with microscopic colitis b/c of ongoing bowel issues for the past 1-2 years. i can't remember that far back and how long it took me to get back to normal after going gluten free. i have just been focused on the past 2 years and my issues now. so, maybe it may take your body a little longer to get back to how it was before or see if microscopic colitis could be your culprit.

ravenwoodglass Mentor

You may want to try dropping the dairy and the processed for a bit and seeing if that helps. Go with whole naturally gluten free foods. Do you take any meds at all? If you do check with the maker to be sure they are safe. You mention that your supplements say gluten free on the bottle, do be sure to read all the ingredients as some will say gluten free but still have barley or wheat grass in them. Be strict about cross contamination and if you have a signifiacant other and they eat gluten make sure they brush their teeth well before you kiss.

I hope your feeling better soon and do have your doctor check for other issues that may be going on. A repeat of your diagnostic blood work may be helpful in telling you if you have gluten sneaking in somewhere. It may not be down to normal levels yet but the antibodies should be down at least a bit if you don't have gluten sneaking in.

Gemini Experienced

i have been gluten-free for 9 years and recently just got diagnosed with microscopic colitis b/c of ongoing bowel issues for the past 1-2 years. i can't remember that far back and how long it took me to get back to normal after going gluten free. i have just been focused on the past 2 years and my issues now. so, maybe it may take your body a little longer to get back to how it was before or see if microscopic colitis could be your culprit.

This is very good advice. Many Celiacs are being diagnosed with microscopic colitis when their symptoms fail to respond to the gluten-free diet. It isn't always about gluten.

I also had severe damage.....all the villi were pretty much gone. I did respond really well to a strict gluten-free diet yet I don't screen for topical products other than lipstick. If you are following a strict gluten-free diet, then you should heal enough that the diarrhea should stop fairly quickly. If it doesn't, then I agree that you should be tested for colitis because it's becoming increasingly common, like Celiac.

BrookeT Apprentice

I have just figured that one out, as you mentioned, that some companies say their product is gluten free but they have wheat grass or barley in them. I definitely pay close attention to labels now!

I am pretty strict about avoiding cross-contamination in my house.

I am not taking any meds. The only things in my diet that I question are cooking oils and spices. Do I need to be concerned with the possibility of cross-contamination with those?

I probably should have a followup blood panel run to see if my #'s came down.

Thanks for the advice!

You may want to try dropping the dairy and the processed for a bit and seeing if that helps. Go with whole naturally gluten free foods. Do you take any meds at all? If you do check with the maker to be sure they are safe. You mention that your supplements say gluten free on the bottle, do be sure to read all the ingredients as some will say gluten free but still have barley or wheat grass in them. Be strict about cross contamination and if you have a signifiacant other and they eat gluten make sure they brush their teeth well before you kiss.

I hope your feeling better soon and do have your doctor check for other issues that may be going on. A repeat of your diagnostic blood work may be helpful in telling you if you have gluten sneaking in somewhere. It may not be down to normal levels yet but the antibodies should be down at least a bit if you don't have gluten sneaking in.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,919
    • Most Online (within 30 mins)
      7,748

    globello
    Newest Member
    globello
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • 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.