Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

hollyhs

Frustrated And Need Help!

Rate this topic

Recommended Posts

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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • June 19, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


    • July 08, 2019 Until July 09, 2019
      0  
      14th Euro-Global Gastroenterology Conference happening in Zürich, Switzerland during July 08-09, 2019. We are expecting more than 300 attendees representing from more than 40 countries who would be sharing their experiences and expertise around the world Theme: “Future Perspectives and shaping trends in Gastroenterology”
      You may learn more about our congress by visiting our website: https://europegastroenterology.gastroconferences.com/
      Tracks
      Microbiota and diseases|Acid Related Diseases|Helicobacter Pylori Treatment|Therapeutics targeting Microbioma|Advanced Nutrition and Dietetics in Gastroenterology|Inflammatory Bowel Diseases|Clinical Advances in Liver Diseases|Gastrointestinal Disorders and Drug Delivery|Obesity and Treatments|Gastrointestinal Pathology|Neuro Gastroenterology and Motility disorders|Pediatric Gastroenterology, Hepatology and Nutrition|Gallbladder and biliary tract Diseases|Latest advances in Gastroenterology treatments|Endoscopic Innovations in Gastroenterology and surgery|Clinical and Radiographic Gastrointestinal Abnormalities|Functional GI Disorders|Changing Trends in Etiology of Liver diseases|Epigenetics of gastrointestinal diseases|Bariatric Surgery|Gastrointestinal Radiology and Imaging|Developing treatment for Viral Hepatitis and Fibrosis of Liver|Emerging Trends in Clinical Research of Liver diseases|Hepatitis B treatment Patterns|Therapies in Pancreatic cancer|Diabetes and hepatocellular carcinoma|Intestinal Metaproteomics and Type 1 Diabetes
      Conference Benefits
      ·         CME Credits  
      ·         CPD Credits
      ·         Research publication in proceeding book
      ·         Abstract publication in associated online journal
      ·         DOI by Cross-Ref
      ·         Online speaker webpage
      ·         Workshops and Symposium
      ·         Certificate for participation and attendance
      ·         Young Researchers Forum and Posters Award for Students
      ·         B2b and Networking meetings
       
      Program Director
      Sophia Williams
      Gastroenterology 2019 | Zürich | Switzerland
      conferenceseries.com https://europegastroenterology.gastroconferences.com/
      E-mail: williams.sophiaa@yandex.com
      Whatsapp us : +442382146717
×
×
  • Create New...