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

Frustrated And Need Help!


hollyhs

Recommended Posts

hollyhs Newbie

Hello All,

AGGGGGG! I am so frustrated! I was diagnosed with Celiac about 8 months ago and have been faithfully following a gluten free diet. I had blood work and an endoscopy last week and my anti-bodies are now negative and my intestine looked good, just a little inflammation. So, yea!

My frustration is from the other food sensitivities that have come about! I think I've had maybe 5 good days in the last 2 months! My symptoms are very swollen, red itchy patches around my eyes and jawline, GI discomfort, joint pain, dull headache and just feeling plain crappy. First I thought it was eggs, so no eggs and I felt good for a while then my symptoms returned. So....I thought dairy, good for a while then bam, so corn I thought, then nuts and so on and so on. I am so frustrated because I don't know what not to eat anymore! I kind of keep a food diary but often there is not any one thing that I can identify causing my symptoms. I guess my question after all that is what can I eat that will most likely not be allergenic so I can do some food challenges and figure out what keeps getting me. Shoot, the gluten part of this whole thing was the easiest!

Thanks for letting me rant and for any suggestions!


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I don't have other food issues (knock on wood), but many here have issues with soy.

Others will post.

gadgetgirl Newbie

Besides gluten, I also have issues with caisen (dairy), soy, yeast, almonds and coconut (even the oil).

Are you taking any medications or supplements? I found out the hard way that the first brand of fish oil capsules I bought contained soy :(

If it is any consolation, it took me about 18 months to figure out all my intolerances. Patience, and a food diary, is the key.

ShayFL Enthusiast

I HIGHLY recommend looking into the SCD (specific carbohydrate diet). I was in your same boat and am doing MUCH better. The SCD helped me a lot. I dont follow it 100%, but very close. I ate corn the other day with no real issues other than I can tend to overeat it in the form of corn chips. I am also now able to tolerate butter and kefir.

On the SCD it allows nuts in the form of nut butters first, then nut flours and not until healed whole nuts. It is an "easy to digest" diet.

www.pecanbread.com

Originally designed for autistic children it is helping A LOT of adults with food sensitivities. There is a thread in here on it too.

Wishing you well soon!

AliB Enthusiast

This kind of backs up the thought that rogue bacteria is behind a lot of our health issues. I have this feeling that the little beggars, when deprived of their main food just turn to a different one. Only by avoiding carbs per se can we have any hope of conquering them!

When I started gluten-free I also dropped dairy. Then I found that I was reacting to virtually ALL carbs. Interestingly the original Celiac treatment back at the end of the 1800's was to remove Carbs from the diet. It was believed that the problem was carbohydrate in most forms. The treatment proved to be very successful and was used for decades before they decided to run with the Gluten 'thing'. For many of us though, gluten is just the tip of the iceberg and we have issues with a lot of other foods, mainly carbs, and our reactions to other foods may well just be due to the out of control bacteria being antagonised by them.

I too am following the SCD and slowly getting better (it would be quicker but I am not as disciplined as I should be!). If you suffer with gas and bloating after eating certain foods then you can bet your bottom dollar that the bacteria is having a field day.

The other issues you are having are almost certainly triggered by bacterial reactions to foods and the toxic by-products that result.

Because the SCD removes the trigger foods from the diet and encourages the replenishment of good bacteria in the gut it saves the hassle of trying to figure out what is causing the problems. Some still get problems with odd foods for a while but eventually it sorts itself out.

I had a problem with eggs initially but as my gut has started to heal and I am beginning to get the beasties under control I can now eat eggs without any problem at all as long as they are well-cooked.

There is a struggle going on in your digestive system - it's you or them and they are desperately trying to get, and keep the upper hand. The only way to win is to make sure you are feeding yourself but not feeding them!

hollyhs Newbie

Thank you all. I think will give the SCD a try........it seems to make sense. Have any of you with dairy issues tried the SCD yogurt successfully?

kdaley Newbie

You might want to consider fat intolerance. Celiac's can and often does destroy the gallbladder - it did mine! You need a certain amount of dietary fats to absorb the fat soluable vitamins (so don't eliminate fats completely). However, if you notice more GI discomfort in the late afternoon/evening, a lot of smelly gas, a pain under your first right side rib (just above your stomach), perhaps some pain in your back directly behind that area, and some right side shoulder pain - you might consider that it is your gallbladder.

Kelly


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

They are backordered on the GIPro yogurt starter that SCD recommends. I think some are using Kirkman's. I found an acidophilus supplement that makes decent yogurt. But I am using goat milk kefir right now. A local dairy produces it from raw goat milk. It has a strong bite. But it is helping me and I do not react to it in anyway.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,213
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    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

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.