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Celiac newbie frustrated with doctors

Brandi1969

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squirmingitch Veteran
squirmingitch
Posted

My hubs loved black licorice all his life. Me, I can't even stand the smell of it. But, for those who are totally into the real deal -- these are strong I warn you -- my hubs can only eat one at a time. 

Gimbals Fine Candy Scottie dogs Natural Licorice

 

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  • Recent Activity

    1. Beverage
      - Beverage replied to Jean Shifrin's topic in Related Issues & Disorders
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      What do my test results mean?

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      In the UK and some other nations there is an increasing tendency for doctors to forego the endoscopy/biopsy if the ttg(IGA) is 10x normal range or greater. Your son's score easily exceeds that. There is only a 5% chance that his elevated ttg(IGA) levels are caused by something other than celiac disease and not more than a 10% chance that his elevated ttg...
    4. Dhruv
      - Dhruv replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Confused with test results

      Ok, so reference range for labcorp for (tTG) IgA Reference Interval: 0-3, Unit: U/mL( for my son it's >100) Transglutaminase (tTG) IgG Reference Interval: 0-5, Unit: U/mL( for my son is 57) Thank you, I will ask doctor to order the correct test. Since he is on gluten due to unawakened will investigate throughly.
    5. trents
      - trents replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Confused with test results

      If the purpose of the endoscopy is to check for celiac disease they will take biopsies of the small bowel lining. But not all endoscopies are done for that purpose. You would need to be clear about the purpose of the endoscopy with the doctor ordering it.
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    • Beverage
      Severe joint swelling from Celiac

      By Beverage · Posted

      I also did not have the so-called typical Celiac symptoms, my main complaint was always getting sick, asthma, loss of sense of smell, and kidneys were failing. My GFR was in 40's - 50's and docs saying "Kidneys don't get better, we can only slow the decline" also "We don't do anything for kidneys until you are ready for dialysis." I was blown away, so decided to go to a naturopath who diagnosed me with Celiacs rather quickly. After the Celiac diagnosis and lots of improvement overall on gluten-free diet, kidneys came back a little, but not great like I'd hoped.  I had improvement in asthma and other issues with benfotiamine (b1), metylcobalamin (b12), and flush niacin (b3), but kidney improvement remained elusive. Ok so I'll admit I became an internet doctor and searched and read everything to get kidney function up. I happened across someone on Twitter who touts natural immunity and supplements for healing. So I tried what she recommended for CKD:  Nettle seed extract, silymarin (milk thistle), and Cordyceps mushrooms. I started at the end of April of this year, and got my kidneys checked in mid-September. In 4 1/2 months, GFR went up to 70!  All other numbers looked fantastic. I can't say it will help you, but worth investigating. I believe dosage amounts are important, so let me know if you want more information.  
    • knitty kitty
      What do my test results mean?

      By knitty kitty · Posted

      There's different reasons why one may be seronegative. Some Seronegative Celiacs may be genetically encoded to be IgA deficient.  But, they may still make IgG antibodies, hence both IgA and IgG antibodies are tested for in the full Celiac Panel of blood tests.  Instead of IgA and IgG antibodies, some Seronegative Celiacs may make other types of antibodies, like IgM antibodies, which aren't usually tested.  Some may make antibodies, not against Gliadin, but other immunogenic peptides in wheat, barley and rye.   The immune system can respond to gluten by sending in different types of protective immune cells, which don't result in IgA production, but result in changes in the types of immune cells in the intestinal tissues may be seen.  There's also the possibility that in some seronegative Celiacs the production of antibodies in the gastrointestinal tract is so poor and limited in number that sufficient antibodies don't get into the bloodstream where they can be measured.  Chronic Inflammation and Villous Atrophy may result in anemia and thiamine deficiency that can result in poor antibody production.  However, healing of the intestinal lining and villi may restore the ability to produce IgA and IgG antibodies.  They may test positive on serology at a future time. I believe I'm of the last group.  I know at one point my doctor said I had high antibody levels, but the doctor refused to do further testing for specific antibodies found in Celiac Disease.  He laughed at me for suggesting Celiac because I was not the "Classic Celiac", all skin and bones, wasting away from malnutrition.  I was obese, bloated, and prediabetic, all symptomatic of Thiamine deficiency (High Calorie Malnutrition), and also Celiac Disease.  By the time I found a new doctor who would test for Celiac antibodies, my health was so poor from nutritional deficiencies and intestinal damage, I wasn't producing antibodies.  I was seronegative.  I was dismissed as being a hypochondriac, a mental case.  They did not connect my mental health issues with nutritional deficiencies (Wernicke's Encephalopathy, Pellagra, B12 Deficiency Dementia, Scurvy).  Will I undergo a gluten challenge to test for tTg IgA antibodies?  Absolutely not.  I have two genes for Celiac Disease and improvement on a gluten free diet.  That's plenty enough for me.   Interesting Reading: Seronegative Celiac Disease and Immunoglobulin Deficiency: Where to Look in the Submerged Iceberg? https://pmc.ncbi.nlm.nih.gov/articles/PMC4586545/ Clinical profile of patients with seronegative celiac disease https://pmc.ncbi.nlm.nih.gov/articles/PMC10404820/
    • trents
      Confused with test results

      By trents · Posted

      In the UK and some other nations there is an increasing tendency for doctors to forego the endoscopy/biopsy if the ttg(IGA) is 10x normal range or greater. Your son's score easily exceeds that. There is only a 5% chance that his elevated ttg(IGA) levels are caused by something other than celiac disease and not more than a 10% chance that his elevated ttg(igg) score is caused by something else. Please consider these odds.   Then there is the elevated liver enzyme issue which is found in about 20% of those with celiac disease.  I think there is sufficient evidence to conclude that your son has celiac disease and I would talk to his physician about opting out of the endoscopy/biopsy. On the other hand, if you or your son demand more evidence, then pursue the endoscopy/biopsy.
    • Dhruv
      Confused with test results

      By Dhruv · Posted

      Ok, so reference range for labcorp for (tTG) IgA Reference Interval: 0-3, Unit: U/mL( for my son it's  >100) Transglutaminase (tTG) IgG Reference Interval: 0-5, Unit: U/mL( for my son is 57)   Thank you, I will ask doctor to order the correct test. Since he is on gluten due to unawakened will investigate throughly. 
    • trents
      Confused with test results

      By trents · Posted

      If the purpose of the endoscopy is to check for celiac disease they will take biopsies of the small bowel lining. But not all endoscopies are done for that purpose. You would need to be clear about the purpose of the endoscopy with the doctor ordering it.
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