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

No End To D


igorm

Recommended Posts

igorm Newbie

Hello all, I have been on gluten/dairy free diet for 2 months. After the first 3 weeks my digestive system worked like may years ago: no D, no gas, normal appetite, everything was fine. I tried to eat butter, just a little to add to buckwheat. All symptoms came back, and now no matter what I do or eat, I have D. Very little gas, not much bloating, always hungry, everything goes down the toilet in the morning in 2-3 trips. I have food diary, eat very limited number of foods (rice white, black, brown, red and plain quinoa, potato, fish, beef, chicken breast, green salad,, kale, banana, grapes, raisins, olive oil, eggs, few blanched almonds),  Cook everything myself, I do not eat anything processed. One day it is sort of better, feels more solid, next day or 2 it is D again. I do not know what else to eliminate. My blood test had increased Immunoglobulin A, Qn serum 426 (normal <414), everything else in celiac panel negative. I have stomach cat scan next week and endoscopy in 2 weeks. Is it possible to have D for several weeks after getting lactose/gluten? Or am I getting gluten somehow? Or I cannot eat some of these foods? I lose weight too.Doctor said that he does not think that with such blood tests I can be so sensitive to gluten.I do not see any light ahead. 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

That doesn't sound like Celiac blood work. And if the celiac part was negative -.Perhaps gluten is not your issue? I would hate for you to continue suffering and not look for the real cause.

Is that your total serum IGA? That is just taken to see if you make enough response to the actual celiac tests. If your Celiac blood tests are all negative, then I would look for another cause to your problems.

IrishHeart Veteran

Many things can create the big D--even though you are doing a good job of being gluten-free.Infammation lasts for months after a gluten exposure (or after giving it up)

 

Gastritits (inflammation of the GI tract)

Unintentional gluten cross contamination

other food sensitivities

insufficient  fiber

an infection

other inflammatory bowel diseases

 

Why are you having an endoscopy? Is he doing a celiac biopsy during that endoscopy...because if so, you need to be consuming gluten for the test to be valid.

Sometimes this healing process is an up and down road. I understand your frustration, I really do. My entire GI tract was a mess upon diagnosis and it took me a while to turn it all around. Please do not despair. I promise it gets better.

 

In the meantime, you could take the OTC Culturelle probtiotic with lactobaccillus GG

 My GI doc recommends it highly for diarrhea. (plenty of medical lit to support its use)

igorm Newbie

I felt much better after I stopped eating gluten (gas, rumbling in the stomach) and even better after dairy free (completely normal for about a week). This is why I think it is related to gluten and dairy. GI Doctor recommended stomach cat scan to check other organs just in case, and endoscopy to see what else is there, and to take biopsy. About eating gluten before endoscopy: even blood test was done 3 weeks after I started diet. First I was suggested to try diet, and after that I realized that it is easy to test, so I asked and was told that 3 weeks is not enough to skew results, it should show celiac. I guess endoscopy is going to show whether or not there is damage. I have had D for more than 2 years, and it was slowly getting worse. Doctors tested for different things and did not find anything. At the end GI doc said it was more in my head. Gas and other symptoms probably existed for 5-6 years. 

I will try Culturelle. I have tried Align before, doctors recommended it. Did not help. Only today noticed that it has lactose, and Culturelle is lactose/gluten free. Thank you for your responses.

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. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    2. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    3. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    5. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,878
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.