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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Get yourself to a dermatologist asap. They can biopsy the area next to the rash you have to check if it is dermatitis herpeformis, the skin form of celiac. That would be diagnostic of celiac disease on it's own. Endoscopies have a high rate of false negatives so after you are done with all the testing you choose to do give the diet a good strict try for...
  2. ravenwoodglass
    Are you by any chance either lactose or casien intolerant also? If so this med is not for you. In addition many of us with asthma see a great reduction or even elimination of asthma symptoms after we have been gluten free for a while. If you forgot it during those 3 days and didn't have an event perhaps you should talk to your doctor and see whether you...
  3. ravenwoodglass
    Sublingual means it disolves under the tongue. That is really important because the damage to our gut prevents regular oral B12 vitamins from being used by the body. I use Country Life, I find it at my local health food store but there are many good brands available. Just make sure it says gluten free and sublingual on the bottle. The dosages will seem...
  4. ravenwoodglass
    Have you checked whether the soap and sanitizer are gluten-free?
  5. ravenwoodglass
    Yes you do need to be as strict with the diet whether he is celiac or gluten intolerant. They really are the same animal, IMHO, just with sometimes different presentations. As said I would give anything to have been diagnosed at his age when it was mostly just my skin and brain that were effected. It would be 30 years before I developed the GI stuff with...
  6. ravenwoodglass
    I agree it sounds like your reaction to the cheese is an allergic reaction. I would not eat that again. The sores in your mouth could be related to a glutening. As could the exhaustion. I would recheck everything your eating and using.
  7. ravenwoodglass
    Another neuro here. I suffered from the related neuro issues for over 40 years before diagnosis. If I can heal anyone can. The only neuro symptom that I still have after 6 years gluten-free is a bit of ataxia. It has resolved a great deal, I no longer need to hang on to walls or use canes (unless I get glutened). I haven't had another migraine since...
  8. ravenwoodglass
    It would not be uncommon for us. You should look for a rice or almond based milk, gluten free of course, they will be your best bet for now.
  9. ravenwoodglass
    Please don't think she is complaining just because you do. Chances are really good that she is uncomfortable not parrotting you. Do ask her ped to run a complete celiac panel. You may be able to call the office and say something along the lines of "I am being tested for celiac and it looks like there is a really strong chance that I have it. Can we get...
  10. ravenwoodglass
    I agree strongly with this. You also risk rupturing your gallbadder if there are stones in there. If you have stones then there are noninvasive ways to get rid of them. Sound waves can be used to break them up, your doctor (MD) can give you more info on this. If you are newly diagnosed and your gallbladder simply doesn't seem to be functioning well go...
  11. ravenwoodglass
    My symptoms came and went for years. After I started to menstruate they seemed to be worse during the two weeks before my period and then would get a bit better. For a time I thought everything was hormonal in origin. The last 10 to 15 years before I was diagnosed they did progress to an everyday part of life and escalated in severity at that point.
  12. ravenwoodglass
    If you just went gluten-free starting with your evening snack last night this is not a withdrawl reaction but most likely still a gluten one. Gluten does not leave your system instantly the last time a bite goes through your mouth. It takes a day or two at least for your body to realize it is not getting it anymore. If you have not been tested wait on...
  13. ravenwoodglass
    1. You may very well see this reappear. When it does ask for a referral to a derm. They can biopsy the area beside the rash, make sure they don't do the rash itself. The antibodies are found in the intact skin next to the outbreak. If that rash is positive for DH you don't need to look any furthur on the celiac trail as that would be a firm diagnosis...
  14. ravenwoodglass
    Wanted to add the my previous post now that I have a minute but the edit button is gone now so I will expand here. One of the reasons why I would like to see gene testing done routinely on both MD diagnosed celiacs and folks that are 'just' gluten intolerant or self diagnosed is that there may be common patterns that show up. Celiac is also much more...
  15. ravenwoodglass
    Actually Rachel as I have said before I am firmily diagnosed. By an MD, in fact more than one. A diagnosis of DH is a firm diagnosis and I have had DH since childhood. I also have a child that would satisfy your criteria for blood and biopsy diagnosed and another who was definately diagnosed through blood work. I am not selfdiagnosed. I may be an oddball...
  16. ravenwoodglass
    As mentioned NA beer does have gluten. I used to drink it all the time and couldn't understand why it would still give me a hangover. I got pulled over one night and almost got a DWI while drinking NA beer. If they hadn't had a breathalizer I would have gone to the pokey. My ataxia was severe back then and trying to convince the police officers I wasn...
  17. ravenwoodglass
    Celiac is gnentic but not usually congenital. Congenital diseases are present and effecting the body at birth. The genes are present from birth but the disease can appear at any time. There are a few of us who were celiac at birth but celiac usually rears it's head after a severe illness or physical or mental stress. As for the stunting. It depends...
  18. ravenwoodglass
    I hate to be the bearer of bad news but many of us do have issues with many of their products that are made in a shared facility. Many are okay with regular Lays chips and they also make a brand called Staxs that are in a dedicated facility. You may want to post in the products section the varieties that are your favorites and see if other may have had...
  19. ravenwoodglass
    I am so glad to hear this. That will help you a great deal. Do see if she can come here and visit. We would be happy to help her with anything she needs to help you heal.
  20. ravenwoodglass
    Just one last thought to add to the great replies you have already gotten. Have you tried out a new toiletry item in the last couple of weeks? A new or reformulated shampoo, conditioner or lotion? Are you doing any home fixup stuff? Drywall and paints etc are also risk. Or do you help out in a school or daycare sort of place? Things like chalk, clays...
  21. ravenwoodglass
    You can adjust the timing to what your waking hours are for the day. How long before your celiac testing? Make sure you get yourself gluten free as soon as the testing is done, no matter what the result. I think you will find that you are able to eat more normally once you are gluten-free and your body is not dealing with the 'what are you giving me this...
  22. ravenwoodglass
    Yes you could still be celiac with a negative blood test. Up to 30% of us do show up negative on blood work, unfortunately. That negative result can result in years and years of deteriorating health before a doctor is smart enough to tell us to try the diet. Most will see that result and not look any furthur. If just one of the fancy specialists had told...
  23. ravenwoodglass
    I strongly agree with the previous poster. Gene testing is in it's infancy and there is a great deal that is not known about celiac genes. I am a firmily diagnosed celiac. I only got gene testing done because my DD who had been diagnosed by blood and biopsy had her gene panels done and got retested (after being gluten-free for a couple years). The specialist...
  24. ravenwoodglass
    I agree with the previous poster but if you do take her to a derm do make sure that they biopsy beside the lesion not the lesion itself. That is where the antibodies will form. If she can tolerate it use Pepto Bismal for the stomach pain. It will not interfere with acid production. Reflux is common with folks with celiac.
  25. ravenwoodglass
    Layla, It is extremely important to try and eat six times a day as your doctor is saying. I can't stress that enough. Your stomach has kind of 'forgotten' how to do it's job and it needs to be reprogrammed so to speak. That does not mean you have to sit down a regular sized meal. Start out with even just a couple of bites if that is all you can tolerate...
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