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- Wheatwacked replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Confused with test results
Hello @Dhruv, My 16 year old nephew was diagnosed two years. That's not an easy age. This year the whole family has been diagnosed. You might consider getting yourself tested. When my son was diagnosed his doctor suggested my wife and I should also get tested. We declined and not eating gluten free is probably the biggest mistake of our lives. Keep... -
- Jean Shifrin replied to Jean Shifrin's topic in Related Issues & Disorders16Severe joint swelling from Celiac
Thank you so much for this info. I won't know my levels of anything until my next appointment, but I am saving this info and will contact you if I'd like to get more detail. I'm so happy you found some real help! -
- Beverage replied to Jean Shifrin's topic in Related Issues & Disorders16Severe joint swelling from Celiac
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...- 1
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- knitty kitty replied to jmiller93's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8What do my test results mean?
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... -
- trents replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Confused with test results
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...
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By Wheatwacked · Posted
Hello @Dhruv, My 16 year old nephew was diagnosed two years. That's not an easy age. This year the whole family has been diagnosed. You might consider getting yourself tested. When my son was diagnosed his doctor suggested my wife and I should also get tested. We declined and not eating gluten free is probably the biggest mistake of our lives. Keep up with the cricket. My son, diagnosed in 1976 at weaning, was on a swim team since 5. Peer pressure will be a problem with the gluten free diet but his teammates can be supportive. I think this article will help you understand the test results. Are You Confused About Your Celiac Disease Lab Results? While it may be 'silent' there are many symptoms of Celiac Disease that are mistakenly assumed to be 'growing up', or 'normal'. They are not. When I started gluten free diet at 63 I wrote down a list of 19 different symptoms that went away with just no gluten. The rest was undoing vitamin and mineral malnutrition that developed over my life. -
By Jean Shifrin · Posted
Thank you so much for this info. I won't know my levels of anything until my next appointment, but I am saving this info and will contact you if I'd like to get more detail. I'm so happy you found some real help! -
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.
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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/ -
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.
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