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cristiana

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by cristiana

  1. cristiana
    Thank you for the update. At least now you know what you are dealing with. Is the system similar to that in the UK in that you will have a follow-up with the gastroenterologist where you can ask any questions you have, and also a referral to a nutritionist?
  2. cristiana
    One thing I ought to add is that although any new medical condition diagnosis can come as a huge shock/blow, navigating the gluten free diet will one day become second nature to you all Yes, mistakes occur on the way, but it will get easier. A few things that have helped me on my journey: 1/ My husband has said to me a few times, and I think it...
  3. cristiana
    @Kathleen JJ I am based in the UK. The following link is to a website for UK based consumers but even post-Brexit, we are still importing from and exporting to mainland Europe, so chances are some of the products mentioned in the link are from the same factory. Therefore, what your son eats would likely be the same product that I eat when it comes to eating...
  4. cristiana
    If your son eventually becomes very symptomatic, that in itself will help keep him on the diet. I had a friend who was diagnosed roughly the same time as me and she used to tell me a lot that she could get away with eating certain gluten containing foods. (Not a good thing to do, but she did all the same). In time she was unable to tolerate them anymore...
  5. cristiana
    Hi Kathleen Welcome to the forum. I am based in the UK so I am just picking this post up before our US based moderators appear. I think they will want to know the lab values of both of the figures you have provided us with (min/max reading) as they tend to vary - could you post those for us, please? We see a lot of coeliacs who also have helicobacter...
  6. cristiana
    You are very welcome.😊 Do keep posting if we can help any further, and also if you aren't a member already I would recommend joining Coeliac UK if only for one year - they produce a very good gluten-free food and drink guide, a printed copy and also an app you can use on a smartphone which I am told is very helpful when one shops. I think the one th...
  7. cristiana
    Hi @aperlo34 Welcome to the forum. I am so sorry to read that you have been going through all of this. Firstly, I should say that your experience of anxiety is very common, and also, the worsening of symptoms is also something we see reported quite a lot on this forum. Achy joints, twitching as you describe and other symptoms were things...
  8. cristiana
    You are more than welcome. I think there are quite a lot of different types out there, my own nutritionist was a v. highly qualified scientist as well, but at least you can see what qualifications they are which seem to be quite well stated. I wish you all well on your son's coeliac journey. Cristiana
  9. cristiana
    Hi @jadeceoliacuk I am a UK based coeliac and I have used a private nutritionist a few times. She is very highly qualified and having just googled her details, she is listed on this website (see link). For that reason, I think you could trust the listings here as I am quite sure she would not want to associate with this website unless it was a...
  10. cristiana
    @Gluten is bad Hi! I just caught this post, and am writing on the off-chance that you might be based in the UK. If so, I was told some years ago by a pharmacist that in the UK that if a medicine has a Product Licence printed on the packaging, which will appear as the letters PL plus a long number.... for example.... PL 4525908 (making that number...
  11. cristiana
    Hi @sh00148 I am so glad that your son is going to have a blood test next week. If the blood test is that soon, and he has been consuming normal levels of gluten up until now, he should have had enough exposure to gluten to test positive should you decide to stop the gluten immediately, as Scott suggest. However, one thing you may wish to change...
  12. cristiana
    Thanks, @knitty kitty. I've been tested and don't have it, but there is certainly something odd going on. If I get indigestion that can set off palpitations, my sister has that too.
  13. cristiana
    Well, @mswhis I too have IBS, and I think bloating has a similar effect to constipation. Any changes that can lessen that internal pressure should help. Do you have pain in your sacroiliac region, or along the pudendal nerve? I have that. But it does seem to be a lot better now than it was several years ago when I first started the gluten-free diet.
  14. cristiana
    That's a shame, but on another tack - if you are coeliac with digestive issues, such as constipation, you may find that as they settle that might help somewhat. I've just had a quick read online and I see, for example, that constipation can exacerbate IC pain. https://www.healthline.com/health/constipation/interstitial-cystitis-and-constipation ...
  15. cristiana
    Hi @mswhis and welcome to the forum! I don't have IC but have suffered with standard cystitis on and off for years. I have found D Mannose helpful - have you tried it? I know that some IC sufferers have said that it has been beneficial to them.
  16. cristiana
    I remember reading about a passenger who was served the wrong food on a plane and reacted so badly to gluten they ended up having to sue the airline for the medical expenses incurred whilst in the States, where they were hospitalised on arrival. At the time my reaction to gluten was quite mild, and I couldn't understand how anyone could be that ill, but...
  17. cristiana
    At the time of the one awful, substantial glutening I experienced a few years ago, I felt very near to passing out. I think if I hadn't been able to lie down, I might have. As a child I was prone to fainting, and was told then how to avoid it, by putting my head between my knees, or lying down. So now, if I feel things going grey that is what I do and...
  18. cristiana
    In my case I the rash and marks that present tend to be AFTER I have been scratching the skin, not before. There are several varieties of eczema. . https://www.aad.org/public/diseases/eczema/types A few years ago, I was convinced my son had ringworm. He had marks all over his torso, and given we live near livestock, I assumed he'd picked...
  19. cristiana
    PS You asked about severe symptoms. Yes, I can tell you that the one and only time I have taken a really major gluten hit in recent times I had chills, sweats, vomited and thought I was going to pass out. I also felt my heartbeat was affected. I was really concerned at the severity of the reaction. And that was down to eating one piece of homemade...
  20. cristiana
    Hi @Louise Broughton Fellow Brit here! I am sorry to hear of your health issues. If I may chip in here, I think it might be worth your while at least having the blood test to see if you have raised antibodies. Whilst I agree under ideal circumstances people need to eat gluten for a period before both the blood test and endoscopy, it could well...
  21. cristiana
    @sh00148 Hello and welcome to the forum, I'm a coeliac based in the UK and I have only just spotted this thread. Reading your posts about PALs I imagine you are based in the UK too? I am so sorry for all your daughter has been going through but congratulations on your achievement on getting an appointment. I would definitely recommend you...
  22. cristiana
    One other thought: what other blood tests have you had? It might be worth having your iron and haemaglobin levels tested.
  23. cristiana
    @SoBannaz Have you ever been offered any sort of topical treatment for your skin? I occasionally have issues with my skin and during one of the lockdowns in the UK the itching was driving me up the wall - it was in my scalp, on my chest, shoulders, across the stomach. I was really stressed and worried about it. At his request, I sent a photo to...
  24. cristiana
    I think I'd give it a try, it does seem that it helps a lot of people. Do let us know if you want anymore advice, and how you get on.
  25. cristiana
    Hello @Bindi Welcome to the forum! I wonder if you have come across this post on the forum? Do have a read of it. I struggled for quite a long time with ongoing symptoms and I remember seeing a lot about the Fasano diet when I first joined the forum. I never actually adopted it, but it was on my 'to do' list had my issues continued longer...
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