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

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Publications & Publicity
      1

      Coeliac UK Research Conference 2025

      Thanks for sharing this!
    3. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared....
    4. trents
      - trents replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Blood tests low iGA 4 years later digestive issues

      Keep us posted.
    5. Scott Adams
      0

      Celiac.com Video News: November 2025

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.