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- knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders13Headaches / Migraines and Hypoglycaemia
I'm so glad you're still taking Benfotiamine! It's interesting to note that elevated liver enzymes and brachycardia are symptoms of thiamine deficiency and you've had these before taking the Benfotiamine. I have also had these, but since taking Benfotiamine I no longer have them. I hope you can find the courage to increase your dose to 300 mg of... -
- knitty kitty replied to Bebygirl01's topic in Related Issues & Disorders16
How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?
@Liquid lunch, so glad you're going to continue with the thiamine! Good to keep in mind that tannins in tea and coffee can break thiamine in two, rendering it useless. Caffeine can destroy thiamine, too. Take your thiamine separately from these drinks, by an hour or so. Green tea (not macha, though) only has about thirty percent of caffeine as black... -
- trents replied to MTAC's topic in Coping with Celiac Disease1NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS
Looks like from your spellings ("coeliac"), expressions ("bloods" for blood tests) and the lack of timely communication and appointment availability that you must be in the UK. It must be very frustrating to have to deal with such a dysfunctional healthcare system. I hope I haven't offended you. In the UK and in Europe in general, there is trend for... -
- MTAC posted a topic in Coping with Celiac Disease1NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS
My daughter had been complaining of stomach paints intermittently for a while now. We had been to the doctors before in which they said it was just general constipation. For a good while its just been something she complained of and we would put it down to maybe its hunger pains because she is fussy with food, growing pains etc. - She was getting nose bleeds... -
- trents replied to lizzie42's topic in Coping with Celiac Disease7
New diagnosis for 3 year old. Help!
I do not think that foregoing the biopsy when the ttg-iga is 10x normal has yet been adopted as a universal protocol in the U.S. We are not quite as far along on that one as they are in Europe I believe. One option is to trial a gluten free diet and then attempt a "gluten challenge" later on if for some reason it becomes important to distinguish between having...
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By knitty kitty · Posted
I'm so glad you're still taking Benfotiamine! It's interesting to note that elevated liver enzymes and brachycardia are symptoms of thiamine deficiency and you've had these before taking the Benfotiamine. I have also had these, but since taking Benfotiamine I no longer have them. I hope you can find the courage to increase your dose to 300 mg of Benfotiamine. Something extraordinary happens at higher doses of thiamine, a whole different array of health benefits starts happening. I was sceptical, in the beginning, too, but took the plunge and have never looked back. The difference is really astounding. Thiamine is nontoxic and safe even in high doses. I took mine in small doses throughout the day with magnesium. (Mine added up to 2000 mg a day at my most ill without any side effects.) Are you taking magnesium? Any form of thiamine will work better if magnesium is taken, too. Magnesium and thiamine make enzymes essential to life. Celiacs are frequently low in magnesium. (Magnesium Threonate is a really goid kind to take.). I found taking tryptophan before bed really helps relieve the bloating. Tryptophan helps heal the intestines and is needed to make Serotonin, a neurotransmitter that helps regulate intestinal functions. Some people don't get digestive symptoms, they get other symptoms outside of the digestive tract, like brachycardia or tachycardia, thyroid problems, arthritis, or liver damage. Gluten free and making sure you get sufficient vitamins and minerals will help in the long run. Thanks for giving us an update. Keep us posted on the next leg of your journey! -
By knitty kitty · Posted
@Liquid lunch, so glad you're going to continue with the thiamine! Good to keep in mind that tannins in tea and coffee can break thiamine in two, rendering it useless. Caffeine can destroy thiamine, too. Take your thiamine separately from these drinks, by an hour or so. Green tea (not macha, though) only has about thirty percent of caffeine as black tea, but Oolong tea can act as a laxative, so be aware. Yes, physical illnesses like pneumonia can precipitate a thiamine deficiency. We need more thiamine when we're physically ill, mentally stressed or physically active especially in hot weather. Studies showed that patients with Covid who had higher thiamine and Vitamin D levels had better outcomes. Vitamin C is important, too. Thiamine is needed to keep mast cells from releasing histamine. Without sufficient thiamine, mast cells get really touchy trigger fingers and degranulate at the slightest provocation. I'm hoping your reactions to lectins will become lessened as your mast cells get control of their degranulation. Tryptophan, a form of niacin, is very helpful in healing the intestines and making the feel good neurotransmitter Serotonin. Yes, neurotransmitter formation starts in the digestive system! My tummy feels so much better after upsets if I take tryptophan for a while. So happy to help you on your journey! -
Looks like from your spellings ("coeliac"), expressions ("bloods" for blood tests) and the lack of timely communication and appointment availability that you must be in the UK. It must be very frustrating to have to deal with such a dysfunctional healthcare system. I hope I haven't offended you. In the UK and in Europe in general, there is trend for doctors to grant a celiac diagnosis when ttg-iga scores reach 10x normal. Your daughter's scores certainly meet that criteria. I am not guaranteeing that will prove to be the case in your situation as I don't think that is yet a universal protocol even in the UK and in Europe. Some doctors may still insist on doing a scoping with biopsy to confirm the celiac blood antibody test results before granting an official celiac diagnosis. Beginning a gluten free diet now would risk sabotaging the results of the biopsy. There are also government benefits/stipends available in some areas of the UK to offset the cost of gluten free food and also some additional follow-up care if there is an official diagnosis.
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My daughter had been complaining of stomach paints intermittently for a while now. We had been to the doctors before in which they said it was just general constipation. For a good while its just been something she complained of and we would put it down to maybe its hunger pains because she is fussy with food, growing pains etc. - She was getting nose bleeds quite regularly and doctors just said she should have her nostrils cuarterized at some point (has had them here and there since a baby - but dad had the same when young so didn't question) Only recently we went to the doctors for tummy pain again and they requested FBC and a coeliac test. The bloods come back with basically abnormal everything, lots of lows, high platelets, ferritin, iron level of 2 ug/L when the range should be 10.3 - 55.8. I was simply told she was anaemic and to take iron - coeliac result apparently hadn't come back at this stage and no follow up from drs. I called a month later to ask for a copy of her blood test results so I could keep them for my own records, the receptionist of the surgery sent them over and included the coeliac testing results ( I had never heard of them coming back with no update etc) he results stated - Tissue transglutaminase IgA level (XaJg2) Above range > 250.0 U/mL [0.0 - 15.0]. - I am STRESSED. I googled a lot and come to terms with maybe they hadn't got in contact because they don't want you to change their diet until further testing had been done? and I was awaiting a paediatric referral. I then made a doctors appointment for a separate issue (UTI) and upon attending the surgery the nurse mentioned the results briefly (baring in mind this is the first time I would have been made aware of the results) and said because the levels are so high I need to change her diet immediately. I was sent away with no more information but that. I requested a call from the doctor to discuss the results and they said it will take 6-8 weeks for a call back. I find a lot of contradicting advice online and in all honestly I don't know what to do. - Don't stop gluten until further testing done, levels being high so I need to stop immediately. As of late I had cut a lot of processed food/sugars out of our diets and my daughters meals were - 3/4 Weetabix of a morning - cheese crackers for lunch. Who knew I was poisoning her with this food at the time? But ever since I had started on these foods she had'nt complained of a stomach ache once. No other symptoms - she is full of energy, long hair, overall healthy but she is a small frame. I did wonder if she was lacking iron as she had darker undereye but I am also anaemic. I can't help but think of the worse. - I have another daughter 15 months younger and have requested her to be tested also as what it states on NHS is recommended - Whether they get back to me will be the next hurdle. My plan is to remove gluten from our household completely. Myself, partner and other daughter can eat it if out of the house but nothing to be had at home with it in. (Of course I would not sit in front of my daughter diagnosed and eat something she can't have). Although I'm hoping to test us all just to clarify further. I don't know where I am going with this, I'm not sure what to do next, is there any further testing I should request or any other things I should be thinking of? At this stage I feel lost with no support and no guidance on what to do now.
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I do not think that foregoing the biopsy when the ttg-iga is 10x normal has yet been adopted as a universal protocol in the U.S. We are not quite as far along on that one as they are in Europe I believe. One option is to trial a gluten free diet and then attempt a "gluten challenge" later on if for some reason it becomes important to distinguish between having celiac disease and NCGS (Non Celiac Gluten Sensitivity). Although, it is often the case that once you have been gluten free for a significant period, returning to gluten brings more violent reactions. Immunoglobulin A, Qn, Serum is not a test for celiac disease for celiac per se but is a test for IGA deficiency. If someone is IGA deficient, IGA test scores will be artificially low and cannot be trusted. Your daughter is not IGA deficient. Yes, the EMA doesn't get a score apart from being just positive or negative. Unless your daughter is a super sensitive celiac, the biggest challenges will not be keeping her safe in the home but rather away from home. Eating out is the biggest challenge to celiacs because you have not much control over how food is handled back in the kitchen. You can order naturally free gluten free foods but it may be cooked in pots and pans and on grills that are also being used for wheated things. This may be helpful, though some suggest measures in this article may be overkill unless you are super sensitive:
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