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Showing content with the highest reputation on 03/08/2019 in all areas

  1. 2 points
    I can only speak from my own experience but when first diagnosed I would break out in new lesions within an hour or two. I would also get a feeling like I was falling even if I wasn't. Let me know I was in for a real rough time for a while. However as time went on, and I suspect the antibodies left my skin, the time between a glutening and a breakout became longer and the lesions less severe. I have now been gluten free since the early 2000's and just get a tiny blister or two. DH can make us even more sensitive to tiny amounts of CC than folks without DH. The more whole unprocessed foods you can eat the better. Watch out for gluten in topicals while you have active lesions and if at all possible don't eat out until you are very well healed.
  2. 1 point
    Hi Ennis, Thank you for your reply and time really greatful... wow I really have a lot to learn. I really thought is was fonig good by having 5 or 6 pieces of food a day, when you knock out all these items I’m really left struggling on what to left to eat, everything seems to have a bad point in on way or another really left unsure on what to eat 😞
  3. 1 point
    Yes this can happen. What you described is what I go through with even the tiniest amount of gluten. The only difference is I will bleed for a few hours afterwards now. Just this pain alone is enough to make me extremely cautious. It can be so bad that it feels like I am going to pass out. I make sure to bring a phone into the bathroom with me when it happens and have awful thoughts of being found days later dead sitting on the toilet with my head resting on the sink and my pets chewing on my ankles. There is nothing you can do for your freind other than encouraging them that hard as it is he/she has to be more cautious. When you have celiac even a little can hurt and they are keeping the antibodies active. Those antibodies can attack any organ in the body including the brain. Do encourage them to come here and post with any questions or even just read. They are not alone in that many celiacs have a difficult time with their diagnosis and realizing that celiac isn't just a matter of changes in diet but also big changes in many aspects of their lives. Those changes can be dealt with and folks here can help.
  4. 1 point
    Good to know. Even though I have osteoporosis as a result of having undiagnosed celiac disease, I do not take calcium supplements. Recent research finds that it can cause heart and kidney issues. My mantra? Get your calcium from food!
  5. 1 point
    I think you are doing the right thing. Give it another month or even wait a full six months (since your symptoms improved and then came back) before checking your antibodies again. Why? The gluten-free diet has a steep learning curve. Unless you were diagnosed at a major celiac center, chances are you got the “you have celiac disease. Go gluten free and good luck!” speech like so many of us. That means it is up to you and your family (maybe) to learn a complicated diet and more importantly, learn to deal with cross contamination. It takes time. Mistakes will be made. It happens. It WILL happen. Your antibodies are high. Every exposure at this point could increase them or keep them elevated. For me, a hit, can mean months of feeling ill. For hubby it is about a week. Every person is different. With two strongly positive test results, Your GP is right in my non-medical opinion. Now, I am biopsied confirmed, but I luckily had excellent insurance. I also wanted a biopsy because my hubby had been gluten free for 12 years and I knew exactly what a celiac disease diagnosis meant. You are right in that even if your biopsy was negative (easy to miss damaged areas), you should still trial the diet. What counts is feeling good. If you should find that you are still not feeling better after months of being gluten free (even doing the Fasano diet which is basically no processed foods or eating out) you should reconsider the endoscopy. Celiacs can have more than one autoimmune disorder and other issues like Small Intestinal Bacterial Overgrowth (SIBO) should be ruled out. Also keep a journal because I thought I was getting glutened but turns out Xanthan Gum which is used in Commercial gluten-free breads/flours was the culprit (my hubby is my canary). Look for other intolerances which may resolve once your gut heals. Leaky gut is real per this celiac expert: https://m.youtube.com/watch?v=wha30RSxE6w I would save money and wait six months to master the diet and heal (though if really sick it could take a year or longer) before doing a repeat antibodies panel. The point is to see if antibodies are declining. Actually you might be able to check just the two tests you were positve on and save money. Depends on the lab though. Even if you had liver issues and if it is due to celiac disease (which is systemic), it can resolve on the gluten-free diet.
  6. 1 point
    Remember, the tests for celiac disease (antibodies) were designed to help diagnose celiac disease and not for dietary adherence. Unfortunately, they are the only “tool in the toolbox” that is non-evasive. Doctors typically look for a downward trend. It can take over a year for antibodies to recover. They might even remain elevated even when your small intestine has healed. That happened to me. I was so discouraged that my antibodies were not coming down and a repeat endoscopy showed a healed small intestine. What was keeping my antibodies elevated? Most likely my other autoimmune issues which can flare up — gluten free or not. Measure your success by how you feel and give yourself well over a year to heal as celiac disease is systemic. If you still have issues, get another endoscopy. My last one revealed Chronic Autoimmune Gastritis. At least I knew I was doing gluten free correctly!
  7. 1 point
    Let's try that link again: https://www.practicalgastro.com/pdf/September08/HlywiakArticle.pdf This was not me: You said in an earlier post that until you went entirely gluten free in your house you didn't realize how much you needed that. My household has been gluten free since 5 months after my dx. That is when my husband was dx'd. That was about 7 years ago. I would never make gluten bread, cakes, fried chicken, pastry or anything involving loose gluten flour in my house - never! I would discourage any other celiac from doing so or from being in a household where someone else is using, baking with loose gluten flour. If you are talking about being celiac versus being non celiac gluten sensitive - NCGS - then no, it is not a whole different world. There is still research being done on NCGS. It does not cause the gut damage like celiac does but they are not sure if it causes damage, permanent or otherwise, on other portions of the body. They are not yet sure either if it is actually, in fact, celiac disease before it begins destroying the gut - in other words - pre-celiac. Such people do react to gluten and until we know for sure that its not doing any actual damage then they need to be just as vigilant in avoiding gluten as anyone with a celiac diagnosis.
  8. 1 point
    Of course I can not diagnose you over the Internet because I am not wearing a white coat. However, I do have celiac disease, autoimmune thyroiditis and more recently, autoimmune Gastritis (which seems to like to hang with Hashimoto’s). Your elevated thyroid antibodies indicate that you have autoimmune disease. Your doctor should see how your thyroid is actually functioning and determine if you are hyper or hypo as treatment is completely different. If you completely avoid gluten and you are still unwell, please see a GI. I hope this helps.
  9. 1 point
    Wait a minute. When I was diagnosed, I had lymphocytes and patches of blunted or non-existent villi. My repeat endoscopy revealed a healed small intestine. No lymphocytes were noted. Lots of things can cause lymphocytes in the gut: https://www.verywellhealth.com/marsh-stage-of-celiac-disease-562711 Non-responsive celiac disease is just like when you were diagnosed — Villi damage and lymphocytes despite being on a gluten free diet. Researchers found than many people thought they were doing a good job of being gluten free, but in reality, they often are getting traces of gluten somehow into their diet. Really, how is your GI to know? You are self-reporting your diet. Consider a super strict diet (we call it the Fasano diet) and do not go out to eat for a few months. Eat nothing you do not prepare yourself! No processed foods because 20 ppm might be too much for you as an individual. If this does not work, you might indeed have Refractory Celiac Disease or you might have something else. A GI should work you up for sure! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/ Two years ago, I somehow got gluten into my diet. My DGP IgA was off the charts. I had my normal symptoms and new ones. My GI suggested a repeat endoscopy, but I insisted on the Fasano diet. It did not relieve my GERD-like symptoms. I caved and had the endoscopy. Turns out I have biopsy-confirmed autoimmune Gastritis but my small intestine is just fine. Why share this? Not all symptoms are due to celiac disease.
  10. 1 point
    Why are you taking iodine? I have had Hashimoto’s Thyroiditis for 20 years and never took iodine. If you are iodine deficient, you can develop a goiter and become hypothyroid. But you said you had autoimmune thyroiditis. No amount of iodine is going to stop your body from attacking your thyroid in my non-medical opinion. Usually, thyroid hormone replacement is prescribed. Hashimoto’s can also cause nodules and an enlarged thyroid. To determine which kind of hypothyroidism you have, ask your doctor to test you for thyroid antibodies. Stop the iodine. It is RARE, really rare, for anyone in the US to have an iodine deficiency. Keep taking it if a medical doctor has tested and prescribed it for you. Ask your doctor about a candidiasis rash (fungus) just because that occurs often in that area. As far as your rash, only punch biopsy can determine if you DH. A dermatologist who is very DH/celiac savvy can do this. But the treatment is the same no gluten! So I am not sure if it is worth identifying DH. Active celiac disease can cause many rashes. It sounds like you are on the right path. Get gluten out of your house and your kids tested for celiac disease. My house is gluten-free. My non-celiac kid gets her gluten fix outside of the house. Every few years, I load her up on gluten to insure her antibodies tests are accurate. Because anyone can develop celiac disease at any time. Welcome to the forum!
  11. 1 point
    The following detailed explanation of serological tests for celiac disease was written by Tom Ryan, Technical Service Specialist, INOVA Diagnostics, Inc. There has been a lot of discussion about serological testing for celiac disease recently, specifically regarding tTG (tissue Transglutaminase) testing. I will try to answer some of the many questions that have appeared on this list about all of the tests. First, and this applies to any of the blood tests, you must currently be on a gluten containing diet for the tests to be accurate. Antibodies are produced by the immune system in response to substances that the body perceives as threatening. The immune response that your body produces is its response to being exposed to gluten in the diet and its subsequent effect on the intestinal mucosa. If there is no gluten in the diet, then there is no response that we can measure. A brief change in diet will not have a noticeable effect. If you have been gluten free for a week or so, it will not make any great difference. The response might be marginally less but the difference is insignificant because the body has not had time to respond to the change. Conversely, if you have been gluten free for a protracted period of time and decide to be tested, a brief challenge of a couple of weeks is not enough to elicit a response and get an accurate test. There are several steps that take place to generate an immune response and it takes time both for the positive reaction when gluten is present and to clear the antibodies when gluten is eliminated. There has been a great deal of discussion about how much and how long a challenge should be and there is no consensus. Talk with your Doctor. My personal feeling is that the minimum is 2 slices of bread per day for 6 weeks to get an accurate test but I would not try to second-guess the Doctor. There are basically four tests that can be performed to aid in diagnosing celiac disease. Notice that I say they will aid in diagnosing celiac disease. Immunology is fairly accurate but it is far from being an exact science. All of the lab tests, regardless of the type or source, are presented as aids to diagnosis. They should not be used alone as a basis for diagnosis but rather are intended to be considered in conjunction with the physical examination of the patient as well as the reported symptoms, etc. by a trained physician. There has been a great deal of confusion about what the tests are and I hope to alleviate some of the misunderstandings. There are many terms that we hear. tTG, IgA, IgG, ELISA, etc. What are all of these? Some contributors to the list make reference to the IgA or IgG test or to the ELISA test. These labels are incomplete for our purposes and could be referring to any number of different tests. We all have, within our bodies, a family of closely related although not identical proteins which are capable of acting as antibodies. These are collectively referred to as immunoglobulins. Five major types of immunoglobulins are normally present in the human adult. They are IgG, IgA, IgM, IgE and IgD. Each of these is a shorthand way of writing immunoglobulin gamma G (or A or M, etc.) and they each perform a different function in our systems. IgG is the principal immunoglobulin in human serum. It is important in providing immunity in a developing fetus because it will pass across the placental barrier. IgA is the principal immunoglobulin in secretions from respiratory and intestinal mucosa. IgE is a gamma globulin produced by cells lining the intestinal and respiratory tracts. It produces the antibodies associated with most hypersensitivity (allergic) responses. It is associated with asthma, hay fever, etc. IgM is a globulin formed in almost every immune response in the early part of the reaction. IgD is a rare protein present in normal sera in a tiny amount. These designations refer to the type of protein that is carrying the antibody in question. Both IgG and IgA subtypes of anti-gliadin antibody are produced, hence we refer to them as IgG gliadin or IgA gliadin. Collectively they are anti-gliadin antibodies. Anti-Gliadin Antibodies: Both IgA and IgG anti-gliadin antibodies (AGA) are detected in sera of patients with gluten sensitive enteropathy (celiac disease). IgG anti-gliadin antibodies are more sensitive but are less specific markers for disease compared with IgA class antibodies. IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur. On the other hand, the IgG anti-gliadin antibodies are 91% specific and have an 87% sensitivity. This means that they will show positive results more readily but there is not as strong a correlation with celiac disease. It is less specific. Patients with other conditions but not afflicted with celiac disease will occasionally show positive results. IgG anti-gliadin antibodies are detectable in approximately 21% of patients with other gastrointestinal disorders. This test might yield false positive results but is less likely to yield false negative results. A sensitive testing protocol includes testing for both IgA and IgG anti-gliadin antibodies since a significant portion of celiac patients (approx. 2-5%) are IgA deficient. This combined IgA and IgG anti-gliadin antibody assay has an overall sensitivity of 95% with a specificity of 90%. The type of test used to detect the anti-gliadin antibodies is called an ELISA. This is an acronym and it stands for Enzyme Linked Immuno-Sorbent Assay. ELISA is not a test in itself. It is a method of testing and it is a relatively simple test to perform. It involves putting a measured amount of diluted patient serum into the wells of a specially constructed and prepared plate and incubating it for a period of time with various chemicals. The end result is a color change, the intensity of which is dependent upon the concentration of anti-gliadin antibody (or other protein being measured) in the patient serum. The ability of this colored solution to absorb light at a particular wavelength can be measured on a laboratory instrument and mathematically compared with solutions that contain a known amount of anti-gliadin antibody to arrive at a number for the amount of antibody present. The sample can then be classified as negative, (0-20 units); weak positive, (21-30 units); or moderate to strong positive if greater than 30 units. The purpose of testing for anti-gliadin antibodies includes, in addition to diagnosis of gluten sensitive enteropathy, monitoring for compliance to a gluten free diet. IgA gliadin antibodies increase rapidly in response to gluten in the diet and decrease rapidly when gluten is absent from the diet. The IgA anti-gliadin antibodies can totally disappear in 2-6 months on a gluten free diet, so they are useful as a diet control. By contrast, IgG anti-gliadin antibodies need a long time, sometimes more than a year, to become negative. The reverse is also true. That is, a patient with celiac disease who has been on a gluten free diet and tests negative for IgA anti-gliadin antibodies, will show a rapid increase in antibody production when challenged by gluten in the diet. Approximately 90% of challenged patients will yield a positive IgA anti-gliadin result within 14-35 days after being challenged. The IgG antibodies are somewhat slower. Endomysial Antibodies: IgA class anti-endomysial antibodies (AEA) are very specific, occurring only in celiac disease and DH. These antibodies are found in approximately 80% of patients with DH and in essentially 100% of patients with active celiac disease. IgA endomysial antibodies are more sensitive and specific than gliadin antibodies for diagnosis of celiac disease. Antibody titers (dilutions) are found to parallel morphological changes in the jejunum and can also be used to reflect compliance with gluten-free diets. Titers decrease or become negative in patients on gluten free diets and reappear upon gluten challenge. The test for anti-endomysial antibodies is more subjective and more complicated for the lab to perform than the anti-gliadin assays. It involves serially diluting some of the patients serum, that is, diluting it by ½ then ¼, 1/8, 1/16, etc. and putting these dilutions on a glass slide that has some sort of tissue affixed to it. The slide is then processed with various solutions and examined under a fluorescent microscope to determine if any of that serum binds to any of the proteins in the tissue. If so, then that patient is confirmed as having antibodies to that particular protein. This method of testing is called an IFA or sometimes IIFA. It stands for Indirect Immuno-Fluorescent Assay. The selection of which tissue slide to use is determined by what specific protein, hence which antibody, you are specifically looking for. Endomysial antibodies react with the endomysium, which is a sheath of reticular fibrils that surround each muscle fiber. Therefore, to detect endomysial antibodies, you would want to use a tissue substrate that contains a lot of muscle tissue. The substrate used most often for this assay is distal sections of the esophagus. These are very thinly sliced and fixed to the slide. They contain muscle fibers and not much else so there is a lot of endomysium available to react with the anti-endomysial antibodies. Reading this test involves viewing the reacted slides with a fluorescent microscope to make the determination. This requires a highly skilled and trained eye and, of necessity, is somewhat subjective. You are looking for a green fluorescence in the endomysium covering the muscle fibers. The test is reported as the titer or final dilution in which the fluorescence can still clearly be seen. As you can imagine, this is very subjective. There are no standardized values and it is up to the judgment of the particular technician what the endpoint titer is. Recently, (1998) the endomysial antigen targeted by the anti-endomysial antibodies was identified as the protein cross-linking enzyme known as tissue transglutaminase (tTG). This has enabled the production of an antigen specific ELISA assay incorporating tTG as a reliable and objective alternative to the traditional and subjective Immunofluorescence based assays. In clinical trials, the correlation with the endomysial IFA assay has been shown to be close to 100%. This is a test that has been very well received in the professional community. It is an ELISA, like the anti-gliadin antibody test and, as such, is not subject to interpretation like the IFA. That is the greatest advantage to this new test! With this or any ELISA, the response is measured on an instrument that calculates the amount of light of a particular wavelength that is absorbed by the solution and prints out a numerical result. There is no chance of human error skewing the results because there is no judgment call involved. The ELISA plate, regardless of what you are testing for, is processed with at least three control sera (sometimes as many as eight) in addition to the unknown sample being tested. There is a negative serum and at least two positive sera containing different levels of the antibody being tested. There are specific requirements for the absorption levels of these three controls. That is, each of them has a minimum or maximum (or both) number that must be seen by the instrument in order for it to be a valid test. If there is any variance from these expected numbers, it is an indication that something went wrong and the test results are discarded and the test repeated. There is therefore no way the technician could report inaccurate results, (assuming they diluted the sample correctly). Either the test was valid, and you can rely upon the accuracy of the result, or the test is invalid, and the entire result discarded. If any error was made during the processing of the ELISA plate, it would result in the control sera numbers being out of range and the entire test result would be thrown out. In summary, the tTG ELISA is measuring the same thing that the endomysial IFA is measuring but with a method that is more sensitive and specific and not subject to interpretation. IgA class Reticulin antibodies are found only in Celiac disease and dermatitis herpetiformis. These antibodies are found in approximately 60% of celiac disease patients and 25% of DH patients. This test is falling into disuse because of the limited utility and the availability of better tests. It is an IFA performed on a tissue substrate with all the attendant problems that go along with it. The development of all of these serum assays has tremendously simplified the diagnosis of celiac disease and improved the accuracy as well. The original criteria for diagnosis according to the European Society for Pediatric Gastroenterology and Nutrition, (ESPGAN), involved a year of arduous studies with: An initial positive gut biopsy; 6 months on a gluten free diet; A second, negative gut biopsy; A gluten challenge for 6 months and; A third, positive gut biopsy. The revised ESPGAN criteria call for positive results in two of the serological tests confirmed by a single positive biopsy. In practice, many gastroenterologists are utilizing the serologies in conjunction with a controlled diet and the clinical presentation to form a basis for diagnosis without the need for the invasive procedure. Through the auspices of the Celiac Disease Foundation and others, a professional symposium and workshop was organized earlier this year in Marina Del Rey, California with participants from Europe as well as the U.S. to establish standards for reporting test results. This should improve testing and diagnosis even more. At the conclusion of this conference a Celiac Disease Standardization Committee was formed to investigate and make recommendations on a standardized method of reporting results.
  12. 1 point
    thank you all for your advise and input I do really appreciate it. it's hard to take in these results but am sure once we in a routine all will be fine I will be having a meeting with the school she will be going on packed lunches and I will ask about gluten free snacks or cakes wen it's another childs birthday.
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