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beachbirdie

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Everything posted by beachbirdie

  1. beachbirdie
    If you choose to biopsy the skin, make sure the biopsy tissue is not taken from the "hives" themselves, but from the skin right next to a fresh outbreak.
  2. beachbirdie
    I'm no expert, but your little guy does look bloaty to me. I am so glad for you that the doctor jumped right towards getting the genetic testing! Most doctors are not so proactive! Are you in UK? Your son is adorable by the way! Welcome to the board!
  3. beachbirdie
    Thanks JaneWhoLovesRain, and Skylark. {blush} I was posting too fast and was mixing up the two diets we follow in our house. The maltodextrin mixup is from me remembering it is illegal on the Specific Carbohydrate Diet.
  4. beachbirdie
    When starting out, it is probably a good idea to avoid processed foods...but if you eat them, there is a list here of ingredients you might see on the labels of processed foods. There are a lot of ingredients that you need to avoid, for example maltodextrin. It's in everything, and it's not a gluten-safe ingredient. Gluten hides in a lot of places. ...
  5. beachbirdie
    The range of your IgA looks like the "total serum IgA". That is a measure of immune activity, it is not celiac specific. A higher level shows your immune system is functioning normally. They test it because there are some people who do not produce IgA, they are labeled "IgA deficient". The standard celiac tests will not be accurate for those people...
  6. beachbirdie
    That's interesting thinking. I've been wondering along those same lines, but wasn't quite sure how to verbalize it. I wonder if this is possibly related to the different genetic types. I have read descriptions of how the villi in different genetic types "grab" and present gluten differently (and have different ways of "deamidating"), which fits with your...
  7. beachbirdie
    What jumps out to me is the white spots on your teeth. You need to find out if you live in an area served by fluoridated water. Call your water company. Most people, because of widespread fluoridation, are now suffering from overdosing and kids raised in fluoridated areas are incurring what is known as dental fluorosis. It can be mild (white spots) to...
  8. beachbirdie
    I second Skylark's opinion. TSH is rising, and many people (I was one) have symptoms long before their labs catch up. I don't recommend an endocrinologist unless you know from other patients that they treat symptoms rather than lab numbers. Far too many endos wait till your TSH is between 5 and 10, and you've been sick a long time. That was my experience...
  9. beachbirdie
    Hi Liz, welcome to the forum. The doc who said being gluten free didn't matter was wrong. You need to be eating gluten (at least the equivalent of 3-4 slices of bread) for several months before you test for antibodies if you expect a reliable result. As for the rash, it might be DH, it might be something else. You would need to ask for a biopsy of...
  10. beachbirdie
    Probably depends on the lab. The Quest Diagnostics website says their comprehensive celiac panel is a "cascading" panel, meaning if the first element they test for is negative, they don't test the next one (for example, the ttg IgA tests first...if negative, they don't add any of the others). If it's LabCorp, their comprehensive panel does not cascade...
  11. beachbirdie
    How's your thyroid? Thyroid can contribute to joint pains and pain in soles of feet (google plantar fasciitis thyroid). Adrenal or thyroid issues can also contribute to the noise sensitivity/irritability you describe. Be sure to get copies of your lab results. If you share them (with ranges) people can give you thoughtful feedback.
  12. beachbirdie
    You might ask your doctor for your lab numbers on the thyroid. Many docs will say you are "normal" even if you are heading toward a thyroid problem. When I first started investigating my health issues, I had a very high normal TSH, and the lowest possible "normal" Free T4. I had all the classic symptoms of low thyroid. An endocrinologist told me...
  13. beachbirdie
    The IgG will give you good information whether or not you are IgA deficient. It's only those who are IgA deficient who need the IgG version of tests. I'm surprised your doctor jumped so quickly to diagnosis. So many doctors will look at a positive blood test and still argue that a person is not celiac if they don't fit a certain "mold" or have all the...
  14. beachbirdie
    There are many possibilities for the difficulty making adjustments to your thyroid levels. How often is your doctor making changes in the strength of your hormone replacement? You should not be making changes faster than every 6 weeks, as it takes that long for levels to respond to your meds. What medication is your doctor using? It is possible...
  15. beachbirdie
    I'm not the expert on this, but it's not necessarily impossible. I believe the Prometheus testing shows your DQ2 and DQ8, there are also people with celiac who have neither. In Europe, if I recall correctly, they use the DQ1 as a celiac marker, and there is some thinking that even DQ7 might be involved. In the USA I think the DQ1 would be used to say you...
  16. beachbirdie
    I'm surprised your doctor didn't call it celiac after seeing the damaged villi. That is still considered the "gold standard" of celiac investigation. False negatives are very common in the bloodwork. This forum is heavily populated with people who had negative bloodwork and positive intestinal biopsies. There are many others who do not fit the "classic...
  17. beachbirdie
    Tooth enamel can be damaged/discolored by fluoride (see pics of fluorosis Open Original Shared Link and Open Original Shared Link). As people get more fluoride from more sources, the occurrence is increasing dramatically. Do you live in a region that fluoridates the tap water?
  18. beachbirdie
    I was very sick with my TSH at 4.5. I can't function if mine goes over 2.0. It would be a good idea to get your levels of free thyroid hormone (FT3 and FT4). Those will tell you if your thyroid is lagging.
  19. beachbirdie
    You might find some help with the Open Original Shared Link or the Open Original Shared Link. Both were created to help people with bacterial issues in the gut and are both very successful in a large number of people. My daughter-in-law is one of them. She was very sick for many months until she started the SCD diet. Basically these diets shun most...
  20. beachbirdie
    You might be one of the fortunate ones who find that a gluten-free diet helps all those other conditions (once you've been through the testing of course!). There is a definite correlation between Hashimoto's and celiac, not to mention that Raynaud's also is often closely associated with thyroid issues. Migraine can be triggered by gluten...it was in my...
  21. beachbirdie
    You might ask them to test her for Juvenile Rheumatoid Arthritis if they have not already done so. That would include ANA (anti-nuclear antibodies), ESR (erythrocyte sedimentation rate), and Rheumatoid Factors. Cedars-Sinai had a nice list of symptoms, you can find them other places on the web too: Open Original Shared Link * High fevers that...
  22. beachbirdie
    I join the chorus! RUN, as fast as you can, from this doc. The TSH test is a test of the pituitary hormone that stimulates the thyroid gland to produce more thyroid hormone. If your body is putting out too much Thyroid Stimulating Hormone, the most simple reason is that your thyroid is lagging in production (hypO not hypER). There are more complicated...
  23. beachbirdie
    I only see two celiac tests on your panel, two versions of the ttg. They should have done a serum IgA at least, anti-gliadin (which should be the deamidated version) and anti-endomysial. You should have further testing. Although, unless you need a diagnosis for school or other purposes (as mentioned by another poster) you don't need a doctor's order...
  24. beachbirdie
    That's what I tried to plead while arguing with her nurse. That's why, actually, I've been glutening over the last 3 months and am going to re-test through a patient-directed lab company. Thanks a bunch for this! It is so helpful! I WILL use this for mom, hopefully the caregivers will be able to adhere to this and keep mom off the gluten...
  25. beachbirdie
    Wow! Thanks so much for your comprehensive answer, and for sharing your own experience! Very meaningful, and gives me a lot to work on. Yes, on the DQ 2.2, my doc wouldn't do any further celiac testing because she said my gene was such low risk there was "nothing to look for". I wanted her to do a second tTG because my first one was in the range where...
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