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Everything posted by beachbirdie

  1. Hi Sarah, and welcome to the forum! You have come to the right place for information and friendly support! Hopefully your doctor will move quickly to get you tested. This forum is full of people who have struggled for YEARS with misdiagnoses before finally figuring out celiac was the cause of their problems. Your short gluten-free trial has already told you a lot, you feel better when you do not eat it! But please, as EmiPark said, keep eating gluten while you are in the midst of testing. You won't produce antibodies if you are not eating gluten, and the antibody level can drop quickly when you stop. Keep us posted how things go with your doc, and keep asking questions! Be sure she tests for these things: Total Serum IgA Deamidated Gliadin Peptides - (2 tests... DGP IgA and DGP IgG) Endomysial Antibodies (anti-EMA) Tissue Transglutaminase antibodies (IgA is usual version, I'd ask for IgG too)
  2. shadowicewolf gave you good advice. The IgG will be accurate and would be the only way to tell you if you do have celiac, in the possibility of a negative biopsy. You may be non-celiac gluten intolerant, that is a valid condition that would need you to be gluten free. You have it right about "IBS". This forum is FULL of people who were told they had IBS, only to find later they actually had celiac (or NCGI). The best way to get the answer; a gluten-free diet! It does not require a prescription!
  3. Welcome to the forum, nosy parker. Your doc should do some more blood need to get the TtG IgG, Deamidated Gliadin Peptides (IgG and IgA are both usually done even if you are IgA deficient) and you can even get an anti-EMA IgG version but that is uncommon and the doc would have to make a point to order it specially. Your low IgA doesn't negate the possibility of accurate testing, the doctor just needs to order the appropriate tests. A colonoscopy won't tell him anything about celiac, though it will rule out cancer and inflammatory bowel diseases like Crohn's. You DO need to make sure he does a good number of samples from an endoscopy that is done through the stomach (from the "top" rather than the "bottom"). If he doesn't take enough samples, it is a wasted effort. As for your rash, that can be biopsied to detect dermatitis herpetiformis. The biopsy needs to be done on HEALTHY skin right next to the rash, not on the rash itself. If you test positive for DH, you don't need anymore testing.
  4. Yes, it is normal to have other intolerances (though not everyone has them). Some of them might go away after you have healed. That is why the experienced folks here recommend doing a "whole food" diet for a while, before trying to replace your favorite gluten-y foods with gluten free versions. Soy, corn, dairy are all common contributors to distress. Some people are intolerant of xanthan gum, which is used in a LOT of products as a thickener/stabilizer; it is found in ice creams, salad dressings, baked goods, and more. Best to stick with the simple; fresh meats/fish, fresh fruits and vegetables, basic flavorings...olive oil and butter go a long way, as do fresh herbs. You might find a digestive enzyme helpful. I've seen some of your threads and several have recommended an informational thread for you...if you haven't gone to read it yet, IrishHeart's Newbie 101 thread is the greatest information source all in one place on this site. She has amassed a wealth of information, she has a LOT of experience with autoimmune diseases. She also happens to be one of the really great people around here!
  5. You are a great blessing to your precious mother! I am very happy for you, you have done a wonderful thing for her! Thank you for coming back and sharing this update.
  6. It's not as common to be diagnosed with celiac if only the Ttg IgG is positive. Especially with negative biopsy. Your doc is good to have you go gluten free anyway. Did you get a copy of your biopsy report? Do you know how many samples they took? If they took only a small sampling, they might have missed damage. Also, did your doc make sure to rule out other conditions that might also raise the Crohn's disease and other autoimmune conditions. Just to be sure. Hopefully the diet will help and you'll be on your way to feeling great!
  7. As Gemini said, make sure your daughter gets tested thoroughly for thyroid. This should include the anti-Thyroid Peroxidase (anti-TPO antibodies) and the anti-Thyroglobulin antibodies (TgAb), in addition to the TSH, FREE T3 and FREE T4. Total T4 and Total T3 are useless without the "Frees". Autoimmune liver disease and inflammatory bowel diseases (Crohn's for example) are conditions that can also raise the TtG IgG.
  8. I don't want you to be frightened but since you asked the immunoelectrophoresis is used to look for a number of conditions some of which are more benign than others. Your doc is being more proactive than most, and looking to make sure there is not something serious that might escape notice. Here is a run-down from Healthline: Why Is the Test Ordered? To Confirm a Diagnosis The immunoelectrophoresis-serum (IEP-serum) test is ordered to help diagnose an underlying health condition. Your doctor may order the test if abnormal results have been detected through other laboratory tests. The IEP-serum test may be ordered if you show symptoms of: a chronic infection an autoimmune disease a protein-losing disease, such as enteropathy (a disease of the intestines) or inflammatory bowel disease Waldenström’s macroglobulinemia The test can be used to rule out conditions such as leukemia and multiple myeloma. Symptoms of these disorders include: weakness and fatigue weight loss broken bones recurrent infections weakness in the legs nausea/vomiting
  9. I am so glad your mom has made herself available to help you! That is a great comfort!
  10. I think "they" say that a slice or two of bread, or a good serving of crackers a day would be sufficient. I know it's crazy to keep yourself sick in order to get answers, but unfortunately that's what it takes! If you have the will to keep to a gluten free diet for life, you could accept the doctor's diagnosis from blood work (a lot of docs won't diagnose on blood work alone!) and skip the endoscopy. You'll get mixed answers if you ask whether you should do the scope or not, some will say "yes" some will say "why bother". In part, a positive scope can solidify your determination to be disciplined about gluten consumption...I would get a copy of my blood tests and see exactly what they tested. If they did a full panel, and several tests were positive, that is a pretty strong indication that the celiac diagnosis is correct.
  11. Please do not stop eating gluten until all your testing is done! If you stop eating before an endoscopy, you will start to heal and they won't see damage. You will then be told you do NOT have celiac when in fact you likely do. Others know more about the endoscopy, but you do need to ask how many samples they plan to take, and negotiate to make sure they take enough. Sometimes doctors do only a very few...2 or 3...and that is NOT ENOUGH. Hopefully others will be along who have more experience with that part of the testing. Do you know which bloodwork they did? It is very helpful if you can get copies of the results so you know exactly what was tested, and what your levels are. That way, if they did skimpy testing, you can ask for a more complete panel. Sometimes they only test one part of the celiac spectrum. Oh...forgive my rudeness...welcome to the forum! I love your that you? Where was it taken?
  12. beachbirdie

    The Paleo Diet?!

    I have completely given up grains, and it wasn't until I did so that I started to feel really good. A nice side effect is that I also lost 35 pounds, without any effort or thought whatsoever. On top of that, I am guessing my generalized inflammation has gone way down; I no longer experience the swelling/fluid retention I used to have. I used to wake up in the morning with slits for eyes, my face was so puffy. NO MORE! I am sort of paleo/primal though I very occasionally indulge in a crunchy treat made from rice flour. I also have eaten ( not more than twice in a month) regular potato, though I'm finding that sweet potato fries and sweet potato hash browns are VERY MUCH to my liking! I used to get horrible carb cravings in the mid-afternoon and would raid the kitchen scrounging all I could find. I no longer experience this in ANY WAY! I was also a sugar addict, and since giving up refined sugars I no longer crave sweets. I also eat yogurt, but not store-bought. I make it myself from local, organic milk. All in all, I am a VERY happy camper with this diet.
  13. I use a pressure cooker and have for many, many years. One of the best places to read about them and gain confidence, as well as get ideas for many ways to use them is Miss Vickie's site. As for making text links, first type your text in the reply window...then, highlight it by putting the cursor in front of the text and dragging the mouse across the text you want linked. THEN go to the little link tool at the top of the message screen. If your message screen does not show the tools, there should be a button to push that says "more reply options". Click that and it should reveal the tools you need. I don't recommend aluminum, I prefer the stainless steel because the aluminum pits if you do a lot of cooking with acidic foods such as tomato. It also leaches aluminum into your food, which supposedly damages our brains (connected with Alzheimer's). I have an older rocker-weight pressure cooker, I also just got one of the fancier ones that doesn't have rocker weight. I don't have a lot of experience with the newer one, the metal on the pan split before I got much use out of it. For this reason I would hesitate recommending the Spanish-made Fagor, though they did honor their warranty and replace the pot. My confidence is low, however, as my husband looked at the metal and said it has what look like flaws in forging and the new one will probably split too. Pressure cooking does not have to be frightening! One needs to remember a couple of rules: 1) make sure you have adequate liquid in the cooker, and, 2) don't leave home with your pressure cooker on the stove. Set your timer so you can get back to your pan before all the liquid evaporates. It is when a pressure cooker run dry that it is dangerous, and rocker-weights lose a lot more moisture through their vents! Pressure cooker recipes take this into account, so don't be nervous when following recipes written for pressure cookers. You will need to spend a little more time learning how to get a rocker-weight cooker set at right pressure if you have an electric stove, once you get it down it will be faster! Gas stove is easy, when you turn the flame down the pressure drops pretty quick too! Anyway, I love my pressure cookers and hope you will love yours!
  14. I hope you are recovering well and on your way to getting some good, solid answers!
  15. Which TtG is elevated, IgA or IgG? Have the doctors considered inflammatory conditions outside of celiac? Sometimes TtG is reflective of things NOT can be elevated in thyroid and liver conditions for example, as well as diseases like Crohn's. Have you tried eliminating dairy? Soy? I would definitely think about going on a GAPS or SCD type diet...dropping processed foods and dropping grains/sugars altogether might be worth a try.
  16. beachbirdie


    Your doc wouldn't test for celiac? Sheesh. There are a LOT of celiacs who do NOT HAVE intestinal symptoms, but they are definitely celiac and definitely suffering from it nutritionally. If your doc is fighting you on the diet changes that are obviously helping your son, I think I might consider changing doctors. You want someone in your corner, not someone you have to do battle with all the time.
  17. Well, you could ask for the gliadin antibodies IgG, and you could also beg for the anti-EMA IgG version (yes, there actually IS one!). But, if you are willing and motivated to go with a gluten-free lifestyle, then you could stop here and be non-celiac gluten-intolerant. NCGI is NOT a "lesser stepchild", it is a real condition. And in order to feel well, it is important to be as gluten free as an officially diagnosed celiac. Did you by chance get any of the genetics done?
  18. Yes, it would be worth getting tested for celiac. If my son were autistic, I'd get him tested too. Oh son is an Aspie...and he does have celiac! You don't need a gastroenterologist, a good family doctor can initiate the testing. What you need is a doctor who understands celiac and is aware of its many presentations, one who knows the full scale of tests that need doing: Deamidated gliadin peptides IgA (DGP IgA) Deamidated gliadin peptides IgG (DGP IgG) Tissue Transglutaminase IgA (TtG IgA) Tissue Transglutaminase IgG (TtG IgG) anti-endomysial antibodies (anti-EMA) TOTAL SERUM IgA (celiacs are often insufficient in this, and if you are insufficient ALL the IgA versions of tests are invalid...that's the only reason for this test, but it is IMPORTANT) While you are waiting, you might want to be exploring some ways to change your diet. Paleo, primal, SCD, GAPS, all can be helpful though a little more restrictive than simply being gluten-free. Sounds like you might benefit greatly from a change, especially one that drops the starches and sugars. I know this is controversial, but some kids with autism have been seen to improve on a gluten-free diet. You might go into the topic for parents of celiac kids, or the "related disdorders" There are some discussions around here on the forum about it, here are a can use the search-box at the top of the screen to find more. autism rising Ahh...nvsmom...beat me to it, LOL!
  19. What city are you close to? I'm in the central Willamette Valley, I like my doctor at Samaritan Heartspring. Their specialty is "integrative medicine", they bring the best of both medical worlds together. They are expensive too, but if you have insurance all the major carriers pay them.
  20. Dumb questions. Had you been eating gluten before you got your testing? I know you posted other topics, but I haven't been around for a while and can't remember what I've read! Were you having symptoms? (Edited to answer my own dumb question...) Ahh, yes, I went to find your older posts and see you were eating gluten! Next dumb you have the actual numbers for the other blood tests? I'll be interested to hear what the biopsy report shows, since they had told you they were only going to take two samples. Do you know how many they actually did?
  21. TSH is the first-line test they use to see if anything is out of whack with your thyroid. What they should be doing is TSH, Free T3 and Free T4. TSH is a measure of the pituitary hormone that gets secreted for the purpose of telling the thyroid gland to make thyroid hormone. As Takala said, your hormones can swing around quite a bit if you have autoimmune thyroid. Your TSH can swing around a good bit even if you DON'T have autoimmune thyroid. You have a TSH number that would concern me though not alarm me (not a medical professional, just an experienced thyroid patient!). If this doc won't test your thyroid hormones, find one who will. There are also places online you can order your own labs if you really want to get that info and can't get a doc on board, and they use the same laboratories your doc would use (such as LabCorp) so your doc can't say they are suspect.
  22. You won't necessarily have ALL the types of antibodies elevated. The one you DO have elevated is a very good test, the deamidated gliadin peptides. Some docs WILL diagnose on that alone. Lots of celiacs here who test negative on ALL the bloods, but still have positive biopsy, and the other way around. As ravenwoodglass said, you need an endoscopy...not colonoscopy. good luck.
  23. beachbirdie

    Help With Results

    Hey learningabouceliac! Thanks for thinking to post an update. I'm so glad to hear you have a definitive answer, and it sounds like you are on your way to healing! Cheers!
  24. Would you be able to post the values of your test results, not just whether they were "normal"? I am curious as to why your doctor checked your thyroglobulin...that is generally done when looking at hyperthyroid people. The total T3 value isn't much use either, you need to know what your FREE T3 level is...the unbound hormone is the only one your cells can use. Though, if your TOTAL is low, it is guaranteed your FREE is low as well since the free hormone is only a fraction of the total. You might beg for an entirely new set of thyroid labs, which should include: Free T3 Free T4 Anti-Thyroid Peroxidase Antibodies (anti-TPO) TSH REVERSE T3 So...I'd say you better be getting with a good doc (and not necessarily and endocrinologist) to discuss this stuff, because on the surface of everything your thyroid isn't serving you well even if your T4 looks normal. The actual levels would help with better understanding. It would appear that you might not be converting your T4 to T3. That is how thyroid function works...the pituitary stimulates the thyroid with TSH (thyroid stimulating hormone). The thyroid should respond by making thyroid hormone, the bulk of it in the form of T4. As the body needs it, the T4 is converted to T3, some bound to carrier proteins (thyroglobulin) and some not. The cells have receptors that recognize the hormone, and pick up as much of the FREE T3 as they need in order to carry out their metabolic functions. With low T3, you are functionally hypothyroid and WILL have thyroid symptoms. But you will need a lot of tenacity and good luck to get a doc to look beyond your TSH and T4. Thyroid is VERY badly treated by most mainstream medical professionals. Also, though your T3 and thyroglobulin levels are off, it doesn't necessarily mean the thyroid itself is could also be pituitary. I don't want to scare you because your elevation is so slight, but increased thyroglobulin can be an indicator of a thyroid cancer though if there is a disease going on, it would still more likely be Hashi's/Graves or other form of thyroiditis. You can poke around to read about individual tests. Is it acceptable to post links to other sites? The thyroid forums at and at start have some wonderful, friendly people who have lots of experience and can offer plenty of support and guidance. There are some thyroid-savvy people here too, just don't know if they'll find their way to this topic! Bottom line, you have symptoms that are explainable by even this sketchy lab report and you need someone who can better investigate this for you.