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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by trents
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Since she is asymptomatic and her first biopsy was negative I would not assume she has developed celiac disease. If her upcoming biopsy shows evidence of mucosal damage you have the firm evidence you need to trigger the gluten-free protocol at the preschool. There are other causes for mildly elevated tTG-IGA levels besides celiac disease. Studies are all...
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@Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.
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False blood test positive?
trents replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Since your mother has celiac disease, I would still keep an eye on this as there is a genetic component. Study results vary wildly, but the numbers are that anywhere from 10% to almost 50% of the first degree relatives of those with active celiac disease will themselves develop celiac disease. -
Rogol72, your recommendation to the OP to "show them pictures of dermatitis herpetiformis" confuses me as the OP does not mention having dermatitis herpetiformis.
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Dangerously underweight, Perfect gluten free and insomnia
trents replied to SaiP's topic in Related Issues & Disorders
So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any... -
False blood test positive?
trents replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So... -
Dangerously underweight, Perfect gluten free and insomnia
trents replied to SaiP's topic in Related Issues & Disorders
Do you mean that your stools firmed up when you began to cut gluten from your diet? -
Dangerously underweight, Perfect gluten free and insomnia
trents replied to SaiP's topic in Related Issues & Disorders
No, I have not before encountered reports of insomnia connected with gluten withdrawal. You did not answer a question from my original post. Are you officially diagnosed or self-diagnosed with celiac disease? Were you diagnosed with just antibody testing or both antibody testing and endoscopy/biopsy? -
Dangerously underweight, Perfect gluten free and insomnia
trents replied to SaiP's topic in Related Issues & Disorders
My concern about the nutrition robbing potential of so much white rice consumption is coupled with the knowledge that when you remove wheat and other common cereal grain flours from your diet you are likely doing away with considerable vitamin supplementation. In the U.S. at least, common cereal grain flours are required to be fortified with vitamins and... -
Dangerously underweight, Perfect gluten free and insomnia
trents replied to SaiP's topic in Related Issues & Disorders
Gluten withdrawal is no different than any withdrawal from any other additive substance like opiates or nicotine. In case you aren't aware of it, wheat has additive properties similar to opiates. So, there is a dependency that develops. When you take the additive substance away, the body cries out for it in some way but if you continue to deprive the body... -
You are not alone, sillyyak52! Many on this forum have shared similar experiences. I expect you can relate to this: All of us probably have experiences in life where we can't relate to what others are having to cope with and just can't understand why they just don't buck up. We haven't walked a mile in their shoes. Hopefully, in time our own experiences...
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Dangerously underweight, Perfect gluten free and insomnia
trents replied to SaiP's topic in Related Issues & Disorders
Welcome to the forum, @SaiP! Have you been officially diagnosed with celiac disease or are you self-diagnosed? What is your average calorie intake per day? Your diet seems to be low in carbohydrates. The only carbohydrate rich food in your list is the white rice. A snack high in simple carbohydrates before retiring for bed at night may help with... -
Welcome to the forum, @pmarklesparkle! Thanks for sharing your diagnostic journey as it may be helpful to others who are getting mixed results during the diagnostic phase. Kudos to the gastro NP who dug deeper and ordered the endoscopy/biopsy. You may also wish to investigate a low iodine diet to get a handle on your continued outbreaks of...
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Postponing seeking a diagnosis?
trents replied to kim-d's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Although the gluten challenge guidelines suggest at least two weeks of at least 10g of gluten daily, I would go for 4 weeks to make sure - if you can tolerate it, that is. When you go in for the blood draw, make sure to ask your physician to order not only the tTG-IGA test but the total IGA test. The tTG-IGA test result cannot be trusted if you are IGA... -
Daughter waiting for appointment
trents replied to jjiillee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
She carries one of the two primary genes that indicate the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. So, the gene test cannot be used to diagnose celiac disease but it can be used as a rule out measure. Having either one of... -
Postponing seeking a diagnosis?
trents replied to kim-d's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Welcome to the forum, @kim-d! Recently revised guidelines or the "gluten challenge" recommends the daily consumption of at least 10g of gluten for at least two weeks up until the day of the antibody test blood draw. 10g of gluten is the amount found in about 4-6 slices of wheat bread. IMO, I would wait until you have time to do it right so as to... -
Interpreting results.
trents replied to np1209's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Based on the available test information, it does not appear you have celiac disease. This is a assuming you are not IGA deficient and also assuming your gluten consumption was adequate both in amount and duration in order to ensure valid antibody testing. Guidelines for the "gluten challenge" have recently been revised. It is now recommended that those seeking... -
Interpreting results.
trents replied to np1209's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Welcome to the forum, @np1209! Your understanding of the gene testing results is correct. DQ2 and DQ8 are the primary genes associated with the potential to develop celiac disease. My understanding is also that DQ2 alone represents stronger potential than DQ8 alone. But we need more information with regard to your antibody test results. You need... -
Being a burden to family/friends
trents replied to DayaInTheSun's topic in Coping with Celiac Disease
Matthew 18:21-35 -
Delayed reaction
trents replied to RDB7918393's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Welcome to the forum, @RDB7918393! For some folks, gluten reactions are delayed but I would not think symptoms delayed of a week or more out would be due to a gluten reaction. Twenty four hours or so but not 7-14 days. I would suspect something else is going on. Eating out is well-known to be the number one sabotaging activity of the gluten-free... -
Welcome to the forum, @Amyinwyoming! Answers to your question that you might receive may not be helpful to you as an individual since sensitivity levels vary significantly within the gluten sensitive/gluten intolerant/celiac community. The other complicating factor is that low levels of gluten in a product may not cause obvious symptoms but may still...
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High dosage of B12 gave me life.
trents replied to ChessFox's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I think you would do well to take a high potency B-complex such that you get more balanced dosage across the spectrum of B vitamins. They work in concert. -
I would disagree with your assessment of the scientific validity of cross reactivity. It has been established in such things a CMP and meat glue. And it may be more difficult to confirm with regard to "gluten free" oats because of recent question marks about the reliability of certification protocols, the celiac community is pretty well convinced that cross...
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Impossible to get diagnosis?
trents replied to allis's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
One thing you might consider is getting genetic testing done to see if you carry one of both of the genes that have been identified as providing potential for developing celiac disease. About 40% of the population carry one or both but only about 1% of the population actually develops celiac disease. So, it cannot be used to diagnose celiac disease but it...