Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac + 6 Weeks Of D - But Antibodies Are Low!

JRock

By JRock
in Coping with Celiac Disease

Recommended Posts

JRock Apprentice
JRock
Posted

Been diagnosed celiac for a little over 2 years now - watched my antibodies go from 100+ to 6 right now. Health has been a real issue for me - a few months ago I took a supplement with iron and wound up so constipated my intestines were literally filled to the brim (my doc showed me on the x-ray). For the past 6 weeks, it's been the opposite - D anywhere from 5-15 times per day. I am gluten-free of course - tried eating just bananas, applesauce and rice for a week, then went just to liquids for two days because I couldn't handle embarassing myself by running to the bathroom at work so many times per day. Then I tried just rice for a week. Fortunately my weight is stable. My gastro doc insists I'm getting glutened and have IBS. I am in so much pain I wind up taking 3 ultrams a day minimum. Tried lomotil so many times in the past 6 weeks. Taking align probiotics and getting a new gastro doc - til then my family care doc put me on antibiotics in case it's intestinal bacterial overgrowth. Of course, that just makes me more miserable. If I eat anything, the tension in my abdomen and the pain is so much that I don't even want to think about food or water or anything. And it all makes me sick. Tomorrow I go see the new gastro doc, then in 2 weeks I have an appointment with another gastro doc. UGH! This is humiliating! And of course being on pain meds causes my doc to raise his eyebrows - well I've tried everything else! These anti-spasmodics and anti-depressants for pain just don't work on me.

Any tips or help would be sooo much appreciated. My doc ran some sort of Crohn's test a while back and he said it was negative (a blood or serum test) - so frustrated.

Jen

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Ugh. That sounds terrible.

If you were still sick on plain rice, you might try the specific carbohydrate diet. It was designed to limit growth of bacteria that cause problems in IBS and SIBO. There are people on the board who have had great results with it.

Open Original Shared Link

Also, take a look at this info on fructose malabsorption, although if you were still sick on plain white rice fructose is probably not the main issue. It might explain problems with applesauce and bananas. You might try Specific Carbohydrate but also limiting fructose at first.

Open Original Shared Link

Good luck and I'm sure folks will have other suggestions for you.

JRock Apprentice
JRock
Posted
  • Author

Thank you - I'm going to ask my doc today about SCD - at this point I'm willing to try anything.

Was awake most of the night with gas and headache (I'm sure the headache was due to not eating) - but it was a welcome break from the constant D - I know not eating isn't the best plan, but I needed a break.

Wondering if anyone has experience with Crohn's - my old doc (who insists I'm somehow ingesting gluten) did some serum test for it and said I don't have the gene, but I can't find anything online about genetic tests.

Ugh - hopefully the new doc can shed some light on this. Also, a new pain developed - lower left side of the front - but more in the back. My boyfriend thinks it's my kidney due to dehydration, so I'm drinking as much liquid as I can handle.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you - I'm going to ask my doc today about SCD - at this point I'm willing to try anything.

Was awake most of the night with gas and headache (I'm sure the headache was due to not eating) - but it was a welcome break from the constant D - I know not eating isn't the best plan, but I needed a break.

Wondering if anyone has experience with Crohn's - my old doc (who insists I'm somehow ingesting gluten) did some serum test for it and said I don't have the gene, but I can't find anything online about genetic tests.

Ugh - hopefully the new doc can shed some light on this. Also, a new pain developed - lower left side of the front - but more in the back. My boyfriend thinks it's my kidney due to dehydration, so I'm drinking as much liquid as I can handle.

Not eating is not a good solution although I know it is tempting. Has your doctor run stool samples to make sure that you haven't picked up food poisoning that is lingering? Too often doctors assume it is IBS or CC and neglect to test. I had salmonella poisoning a while back and had to insist strongly on stool tests. My doctor insisted it was IBS. I got a quick phone call and an apology when the results came back.

Have you had a colonoscopy? Lower left pain can be from diverticulosis, and if you are running a fever diverticulitis which is an inflammation of the dieveriticuli. The colonoscopy can also rule out Chrons.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,311
    • Most Online (within 30 mins)
      7,748
    kayd.sloan
    Newest Member
    kayd.sloan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Canker sores

      By Scott Adams · Posted

      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      Canker sores

      By Jacki Espo · Posted

      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
    • trents
      Canker sores

      By trents · Posted

      Welcome to the forum, @Mrs. Cedrone! Among the various causes for canker sores, are "Nutritional problems like too little vitamin B12, zinc, folic acid, or iron" https://www.webmd.com/oral-health/canker-sores Could you be deficient on something?
×
×
  • Create New...