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Life

Jack V

By Jack V
in Coping with Celiac Disease

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Jack V Rookie
Jack V
Posted

I've been strictly off gluten, milk, and eggs for the past 2 months. As of three days ago knee pain that I've been cluelessly struggling with for two years is completely gone. Excessive mucuos for the most part is gone, and the last three days have been the best of my life. I'm happy, happier than ever before, literally crying through this remembering how hard I've struggled through high school because of social anxiety and depression. I feel like I've been "high" this whole weekend, and I hope I never have to go back to how it was....

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superfob Contributor
superfob
Posted

That sounds awesome. Hope you continue to be happy and healthy!

Could you describe the knee pain? My mom have has it for many, many years, I'm wondering if its food that affecting her.

Its crazy to hear about how food affects people so much...I wish everyone in this world could eat the appropriate foods - would eliminate a lot of mental and physical health issues.

mushroom Proficient
mushroom
Posted

It seems to me (just thinking late at night here Down Under) that when we were all in isolated areas of the world, each area devised a diet that worked perfectly well for them based on what was readily available in their immediate vicinity. It was only when ships started roaming the globe and itinerate travellers wandered thousands of miles through other countries, each bringing back foods and seeds from remote parts of the world, that we started eating things that caused us problems because we were eating things not devised for our digestive systems. The worldwide version of the Paleo diet. If you grew up with beans and tomatoes, eat those. If you grew up with rice and fermented soy (and there is a reason why they ferment it) eat that. If you grew up with meat and roots, eat that. But when you try mixing them all in together and expect to be able to tolerate everything, well, it just doesn't work for a lot of us - maybe we are less developed than those who tolerate all foods :unsure:

The problem today is that, probably, if everyone tried to eat the foods that were right for them, there would be a tremendous imbalance of supply and demand. How many of us would be able to obtain organic, grass-fed beef (which is the only beef I can eat?) How many of us would be able to eat fish that were not farm-raised? King salmon already costs the earth, blue cod which is my favorite fish is $21 lb where I live, animals that are not fed corn or soy are very hard to come by, and most of that corn and soy is genetically modified. So there doesn't seem to be any way of going back. Perhaps those of us who are sensitive to these new (and some of then frankly Franken-) foods will die out, and the omnivorous guts which will tolerate anything will inherit the earth :lol:

ravenwoodglass Mentor
ravenwoodglass
Posted

That's great. Isn't it wonderful to get your life back!!! So glad things are getting better for you. For some of us the gluten reaction creates inflammation in the joints and it sounds like that was what was going on with your knee.

mamaw Community Regular
mamaw
Posted

Kudos to you , hope you continue to find health with the gluten free lifestyle. Did you take yourself off gluten, dairy& so on or did a doctor ? Just curious...I wish more people would just listening to what their bodies are crying out for, help.....

Hope you have continued success & feeling like a high school kid again.....

mamaw

Financialman Newbie
Financialman
Posted

That's great that you are feeling so much better. There are a lot of interesting comments about different foods from many parts of the world. Frankly I don't believe it is entirely the food that is the problem but rather the processing and preserving of the food. The genetic alterations of such things as wheat and injecting animals with growth hormones for the sake of increasing profits is the real problem. Until something is done by all the world governments to monitor and control these alterations higher profit will rule and you and I and future generations will continue to suffer with autoimmune problems. :D

Jack V Rookie
Jack V
Posted
  • Author

That sounds awesome. Hope you continue to be happy and healthy!

Could you describe the knee pain? My mom have has it for many, many years, I'm wondering if its food that affecting her.

Its crazy to hear about how food affects people so much...I wish everyone in this world could eat the appropriate foods - would eliminate a lot of mental and physical health issues.

For myself it's a very odd pain. Nothing like an physical impact/injury. It just seems like your knees are brittle and aren't strong enough to support your weight. On days where the pain is very noticeable it's worse in the mornings, also on these "bad days" keeping my knee in the same position would be very uncomfortable, stretched out fully was the most comfortable position.

Kudos to you , hope you continue to find health with the gluten free lifestyle. Did you take yourself off gluten, dairy& so on or did a doctor ? Just curious...I wish more people would just listening to what their bodies are crying out for, help.....

Hope you have continued success & feeling like a high school kid again.....

mamaw

Well, self-diagnosed with the most contribution to my father. He diagnosed me with milk and tobacco allergy very young... Just 2 years ago in grade 10 I started feeling terrible, lethargic, knee pains, became anti-social(depession/anxiety became much more of a problem). He introduced the idea of celiac, didn't even know what it was. Some blood test confirmed it, with eggs which was a surprise. So long omelettes :'(. I never realised the seriousness of these allergies till about 6 months ago. Where I began a strict gluten diet, although I can only say I've been gluten free for two months as I wasn't yet a pro at decyphering what I could eat.

I just hope I can make the last 5 months of high school memorable, It's already been way better... It's been so different lately, and I love it.

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eatmeat4good Enthusiast
eatmeat4good
Posted

I am so happy for you!! It must be wonderful to finally feel like "yourself"...and just think...you get to feel that good for the rest of your life!

I'm 47, and just figured this out for myself. Then two months later figured it out for my son. He is 16 and is having the wonderful experience that you are. It is so thrilling for me to see him finally feeling good. So I can imagine you must be as "on top of the world" as he is right now.

Hey...I also gotta say....you have a really smart Dad!

With him in your corner and gluten out of your life....no telling how far you can go! :D

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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