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Hi, New Too!


londonlass

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londonlass Newbie

just found you all. im not coeliac its my 21month old dd. Its great to hear from people who suffer themselves as she cant tell us how she feels yet . I have read one topic and already answered some of my questions and put her behaviour into context. She holds her head and crys sooo much if she gets gluten. Noone told me that headaches is a syptom. She has also had diorreah 6x for 2 days,

then 2-3x for 5days,

nothing for 1day

then 2xfor 4days

1day clear

and 1so far today.

She has several other intollerances which leaves her diet very restricted and the only thing i could put her reactions to was stray gluten. It seems from other posts that a reaction this long is not unusual. I dont know anyone else with coeliac and often feel that i have noone to turn to that understands how sick my poor baby can be. keep up the good work. :D


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mrsnj91 Explorer

Just wanted to say HI. I am a newbie too so can't answer many questions. My DD, who is 1, is currently on a wheat free/gluten free trial. We know there is some allergies involved too. One being Barley. So many questions and have no idea where to head!!! She has not been diagnosed with anything one way or the other yet. I am still feeling my way around in the dark and found it a help to chat and look around here! We go next week back to the allergist to talk about the diet and then see what happens from there. I have a feeling we might be staying here! She has done rather well.

Even though your DD is a bit older it is nice to have you here. We'll have a lot to chat about!

~Kimberly

  • 1 month later...
Den Newbie

Hi

My son has been dx'd a "celiac" for about 4 years. What you have said about the diahrea is something I went thru with him. Chapped and bleeding sores on the bottom was a big problem. The doctor thought it was a yeast infection. We then went to lactose intollerance. He was positively diagnosed after his second biopsy when he was ten (thank goodness they have an initial blood test now - we didn't then). Gluten (from my research) is in wheat, rye, oats and barley. Lots of people disagree about the oats but I find my son gaining weight and growing from the new diet. If either of you ladies need help, please e-mail me. I've been around the block a few times with this. Don't let anyone tell you that you child can have a little bit. It's all or nothing, nothing being the best treatment. Hang in there.

Guest nini
Just wanted to say HI. I am a newbie too so can't answer many questions. My DD, who is 1, is currently on a wheat free/gluten free trial. We know there is some allergies involved too. One being Barley. So many questions and have no idea where to head!!! She has not been diagnosed with anything one way or the other yet. I am still feeling my way around in the dark and found it a help to chat and look around here! We go next week back to the allergist to talk about the diet and then see what happens from there. I have a feeling we might be staying here! She has done rather well.

Even though your DD is a bit older it is nice to have you here. We'll have a lot to chat about!

~Kimberly

barley is gluten

Welcome to all of you... my daughter was 3 when I was dx'ed with celiac and subsequently figured out that she has it too after the ped. gi refused to dx her. Her pediatrician agreed to try the diet and see if it helped. It was a miracle.

She is now a very healthy and happy soon to be six year old and she loves the gluten-free diet. I have worked really hard to make sure she doesn't feel different from her friends at school and have found many mainstream foods that are naturally gluten-free that she can eat.

You also need to be careful of things like art supplies, playdough, finger paints, stickers, glue sticks and so on... shampoos, lotions and OTC and prescription medications can also contain gluten

I remember vividly the raw bleeding bottom from the diarrhea and diaper rashes, the projectile vomiting, the violent mood swings and she wouldn't sleep through the night, refused to eat most of the time, and was dx with things like GERD, Failure to Thrive, Anemia and Hypoglycemia... at her five year well check up, her Dr. couldn't believe how well she was doing. Said that you couldn't tell there was ever anything wrong with her.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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