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- lizzie42 replied to lizzie42's topic in Coping with Celiac Disease2New diagnosis for 3 year old. Help!
It was the tTG iga. The first test the range was that it needed to be under .05 and hers was .9 The repeat was a different lab and it said normal was 0-3 and hers was 109. The first test was part of a free study our DR recommended be celiac seemed unlikely at the time. Of course now it all comes together! So hers would have been 18x the upper limit on... -
- trents replied to lizzie42's topic in Coping with Celiac Disease2New diagnosis for 3 year old. Help!
Welcome to the forum, @lizzie42! Can you also supply the reference range for that celiac antibody test? Each lab uses its own reference ranges for the celiac antibody tests so we can't comment otherwise until we know. And was that the TTG-IGA? There is also a TTG-IGG celiac antibody test. There is a growing tendency for physicians to forego the endoscopy... -
- lizzie42 posted a topic in Coping with Celiac Disease2
New diagnosis for 3 year old. Help!
My 3yo was just diagnosed after months of iron supplements barely bringing up her ferritin. I say diagnosed but it's not official yet. Her tTG was 109, her ema was positive. Also she has a vitamin d deficiency in addition to the anemia. She also has the rash. It's been a rough road the last year and a half with her behavior and health and I'm relieved to... -
- ShariW commented on Scott Adams's article in Additional Concerns12Is McDonald's Gluten-Free? A Complete Guide to Safe Menu Options (+Video)
Sounds good!- burgers
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- Kagemusha commented on Scott Adams's article in Additional Concerns1Hard Rock Cafe Customer Feels Mocked Over Celiac Disease
I would say the server was in the wrong I'm this case if it weren't for the guy clearly lying. He was drinking beer with gluten. The man needs shamed for lying about a serious disease.- celiac disease
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It was the tTG iga. The first test the range was that it needed to be under .05 and hers was .9 The repeat was a different lab and it said normal was 0-3 and hers was 109. The first test was part of a free study our DR recommended be celiac seemed unlikely at the time. Of course now it all comes together! So hers would have been 18x the upper limit on the first test and then even more on the second one if I'm doing the math right. The tests were a few months apart because it took a long time to get the first one back.
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Welcome to the forum, @lizzie42! Can you also supply the reference range for that celiac antibody test? Each lab uses its own reference ranges for the celiac antibody tests so we can't comment otherwise until we know. And was that the TTG-IGA? There is also a TTG-IGG celiac antibody test. There is a growing tendency for physicians to forego the endoscopy/biopsy when the tTG-IGA score is quite high. In the UK the that is 10x the high end of the normal range but different docs here in the USA may have their own protocols and not all of them will bypass the endoscopy/biopsy regardless of the blood test score. I also think docs are generally reluctant to do scopes on small children. The celiac rash is called dermatitis herpetiformis. There is a drug called Dapsone that is often effective for preventing dermatitis herpetiformis outbreaks but it is a strong med with some risks such that patients on it must be monitored for signs of liver stress? I think. I would be surprised if a doctor would prescribe it for a toddler. Other than that, the only thing I know of (besides eliminating gluten) that might help is a low iodine diet. Yes, there are gluten free sourdough bread products available. My wife picked up at Costco last year but I wasn't very impressed with it. The sourdough taste and smell was barely noticeable.
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My 3yo was just diagnosed after months of iron supplements barely bringing up her ferritin. I say diagnosed but it's not official yet. Her tTG was 109, her ema was positive. Also she has a vitamin d deficiency in addition to the anemia. She also has the rash. It's been a rough road the last year and a half with her behavior and health and I'm relieved to have an answer. Is she going to have to have a biopsy with numbers like that? I want to just start gluten-free immediately but waiting to try and schedule with a pediatric GI doctor. It will have to be remote because there isn't one here. I hate having an answer but still feeding her gluten. Also, how can I help her rash? We've used aquaphor her whole life thinking it was eczema. It helps a bit but not as much as it should for eczema. I am a sourdough lover and make all our bread. Is there a such thing as gluten-free sourdough? At home I think the gluten-free will be no big deal. I make everything and the kids aren't really picky. I'm worried about when she starts school, eating at friends, etc. It's a little overwhelming!
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If I may put my two cents in here . . . Coffee (caffeine) is a double-edged sword when it comes to headaches. It can relieve them (that's why caffeine is put in many over the counter pain relievers) but it can also cause them - particularly if you consume coffee/tea/soda often and regularly and then are in a situation where you have to go without it for a longer stretch than you are used to. Those who suffer from migraines may likely be more sensitive to the effects of caffeine or the withdrawal of it I'm thinking. And then there is the potential negative impact caffeine can have on sleep patterns for many people. Disruption of sleep patterns is also a migraine trigger for some. I speak as a migraine sufferer myself.
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By Sarah Grace · Posted
Hello Knitty Kitty, Many thanks for asking about my progress. Its mixed.... I've been taking Benfotiamine since November. I started on 300mg, but I didn't notice any change. Increased to 900mb in 300mg tablets throughout the day and initially it seemed to be a cure. But then the Hypoglycaemia and migraines started to return...it's really very difficult for me to control my diet. I'm still taking the Benfotiamine but I now take the Benfotiamine in the evening and usually about 600mg after my early evening meal. I'm still very sensitive to carbs and especially alcohol and sugar, which makes any social activity really difficult especially in the evenings and having to avoid all gluten as well....anyway I guess most members of this forum are very familiar with this. However, I do think the Benfotiamine is very helpful. I still get significant vertigo (very wobbly at random moments) but I think my brain fog and insomnia have improved. I'm quite active physically (gardening and dog walking etc), so need carbs for this. I am a bit of a coffee addict and wonder what impact that might have? Any suggestions that you have that might further improve my diet and management of the hypoglycaemia would be much appreciated, as I definitely have failed to conquer the problem.
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