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

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
      129,840
    • Most Online (within 30 mins)
      7,748

    Gabcar14
    Newest Member
    Gabcar14
    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

    • HilaryM
      Thank you Scott - I can’t think of much that’s changed diet wise but I’ll definitely try to see if any of this works and probiotics are a great idea thank you!
    • cristiana
      Hello there @maylynn  I'm a slow healer from the UK.  I sympathise.  Despite three endoscopies which showed nothing wrong, I frequently suffered from a very sore stomach, bloating, feeling queasy.   For some time I was taking the wrong iron supplement (Floradix instead of Floravital - the former has gluten in it, but the latter none).  But I would say even very little iron from an approved source made my stomach sore, I think it can be quite irritating. Perhaps that is an issue for you? Oats (the gluten-free pure ones) were an issue for many years (now fine).   Even though my endoscopy findings did not reflect any problems with healing, or any other issues, I self-diagnosed myself with gastritis as it seemed the feeling of nausea and in my case burning in the stomach pointed to it.  I went onto a gastritis/reflux diet and that really helped.   Have a google - there are tonnes online.  That meant avoiding spicy, greasy food, onions, tomatoes, coffee and alcohol.  (Actually, I don't drink, but I did toast someone during that time at a baptism and it set my stomach on fire.)   Instead of drinking strong coffee, I drank water, camomile tea, warm ginger water... so soothing.  I would not go to bed with a full stomach when things were bad, I would let my stomach rest from say 8pm to 8am, which really helped.   My husband and I then decided to buy a new oven and to buy a new dishwasher - we did need new ones anyway.  The new oven had two compartments, gluten goes in one, gluten free in the other.  The new dishwasher was a Miele which does a full rinse with clean water before washing the dishes.  But before I could afford a new dishwasher I would hand wash the dishes and make sure they were really rinsed well, no residue  (unlike our old dishwasher that was really not rinsing well at all). I stopped eating out for quite a few years - I think this is a biggy - although I would have coffee and soft drinks out. Eventually, my levels normalised.  What of the above was the 'silver bullet'?  I am not sure, but finally I did feel a lot better.  Occasionally I will take an over the counter PPI (omeprazole) or a small dose of Gaviscon, but most of the time I don't need them now. I'm not expecting anyone to go to all these lengths, but it could be that one or two of the tips I give you might work.  Don't give up hope! Cristiana
    • RMJ
      Yes, it would make sense to go mostly gluten free, since it gives your troubles.
    • SMK7
      Yes, I made an effort to eat extra gluten at least 3 weeks before the endoscopy. I probably ate a some amount in the weeks before that. I had diarrhea, which resolved once I cut back after the endoscopy. So I think it would make sense to go mostly gluten free?  
    • RMJ
      Yay for the normal biopsy! Thanks for the follow up. Were you eating gluten prior to the endoscopy?
×
×
  • Create New...