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

Help With Healing


Dan2010

Recommended Posts

Dan2010 Newbie

So I don't officially know if I have celiac. With that said, I have stomach villi damage as the visual of my small intestine showed them laying down consistant with celiac. I also had elevated antibodies which promted the scope and biopsy. The biopsy was negative, but I also was eating much less gluten. Actually, I was eating much more gluten and protein than normal before falling apart.

So its been about 3 months since I had my crash. For 1 month it was waiting on testing. The second month I decided to just go gluten free and I did start making some slow progress. But then I still had the tightness feeling in my intestine so I thought maybe it was something else and started having gluten again. 2 weeks later I was feeling a bit worse and decided to do gluten free again. Its now about a week or so that I'm gluten free or so I hope. I found out that I was not completely gluten free from things like malt and maybe maltodextrin.

I would like to know what other things to try. What about bile salts? Fat seems to beva real pain to digest. I also can't go crazy on simple carbs either. I had read somewhere that maybe glutamine or some other amino acid helps the small intestine.

So far the major change from being gluten free is that I have about on bowel movement a day instead of 2-4 which I have been like that for years and thought maybe that was good. Now I think that was my body pushing out poorly digested food. I now have darker brown and they don't float. It used to be light brown and floating at least at first.

I had salmon a few days ago and that keeped me up at night. Lean steak seems to sit well. But I need fat cause I am skinny and might be dealing with some lack of fat solible nutrients.

Any thoughts are appreciated even if its an agreement with another post as validation


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



Celiac.com Sponsor (A8-M):



Simona19 Collaborator

Hi!

I don't know much about the medical things, but I can just tell you what happened to me.

I also had major trouble with digestion of fat and sugar(carbs, even grapes gave me gas and pain). I saw the doctor at the Celiac Center in Columbia University Hospital in New York. She had me tested for the small intestine's bacteria overgrowth.

The SIBO can also be associated with the damaged intestines from celiac. The doctor ordered a very simple breathing test.

Now I'm on the two antibiotics for 14 days. I do feel like I was born again. No gas at all, can eat fruit again, and also some fat with no problem. :)

Maybe you have the same thing. I don't know if that is what you have, but is worth to try to check it.

Simona19 Collaborator

I found the symptoms of the Small Intestine Bacteria Overgrowth.

SIBO can mimic the celiac disease. You can have celiac and SIBO too. I look on the internet for symptoms of SIBO, and they are: gas after fruits or sugar- carbs, diarrhea or constipation, abdominal pain. Some patient have chronic constipation rather than diarrhea. With SIBO you will loose vitamins and minerals like with celiac disease. You can have SIBO for many years which can cause:

1. malabsorption of sugars and carbohydrates (gas), Lactose intolerance, malabsorption of other sugars (sucrose, sorbitol- pears, fructose), diseases of the pancreas and inadequate amounts of pancreatic enzymes which can prevent you to digest fat, and you can have vitamin deficiencies like magnesium because they need fat to be absorbed in to our bodies, diseases of the lining of the small intestine like celiac disease.

2. Rapid intestinal transit which can make you Iron deficient

3. Weight lost

4. fatigue and muscle pain.

5. Poor appetite

Good luck!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.