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  1. Ok people - this question is all about poo. I was diagnosed about 2 months ago through elevated labs and a biopsy showing Marsh type 3 histology in the duodenum. I was fairly asymptomatic, at least of the "obvious/stereotypical" symptoms. I did have Hashimoto's thyroiditis (with normal thyroid hormone levels), which I now believe is possibly connected to then undiagnosed celiac. 2 months in, I discovered my normal state was bloated - I didn't even think of it as a symptom, I just thought that was my normal body. I'm not bloated anymore (thanks gluten-free diet!); However, here's where the poo comes in. During the process of diagnosis, I started asking poop questions that had never crossed my mind before? Why's it floating? Does everyone's float (according to my family and friends and Dr. Google - no!) Should it look...raggedy? Is this diarrhea? That might be diarrhea. All my life I for real just thought this was because I ate a lot of fiber. (not as asympotatic as I thought) 2 months in, this hasn't changed. Currently, I'm consistently a Bristol type 6, I go one to three times a day (but more often just 1!) So here's the questions.... 1. How long does it take to get normal, how long did it take you? 2. What should I look for to tell if this is getting better? I have no idea what the standard should be? Thanks! I super appreciate you people here and your very generous answers to everything including poo question.
  2. Wow! It's so interesting to hear everyone's different path and story! This gives a lot to think about. Personally, I know I have high antibodies (EMA being one of them). Because EMA specifically is high, from what I've researched, I think I will go gluten free regardless of the biopsy. If I don't have damage I can't imagine that damage is far away. I was tested about 18 months ago, the doctor ignored (and I didn't even see) the results, my GP re-tested the blood work last week and 3 categories had higher scores than previously. I have very mild GI symptoms (so mild I'm not sure whether they count) but I have two auto-immune diseases and I'm not interested in more. Being a person who appreciates research - I'm kind of curious to know whether there's damage and the extent of the damage. Being a person who doesn't like spending $3,000 or having tubes down my throat, I'm rather less inclined. I've been referred to a Gastroenterologist that I will see at the end of the month. I'm going to talk to the doctor about it, get his opinion, weigh it - and then make my own decision. Thank you all so much for your responses. It is interesting and so helpful to hear everyone's story!
  3. As I understand the Biopsy is the diagnostic gold standard. At the same time, it is not cheap and it is invasive. I understand that Celiac manifests serologically in many ways (or not at all). For seronegtive patients, it can be the only confirmation. What I don't understand is the clinical necessity of the biopsy with positive serology on certain tests. I understand that TTG can be elevated for causes other than celiac and that the tests vary in their specificity. It seems like the EMA test is highly specific (cited in this study as 99%). In one of the studies cited in this lit review, patients with positive EMA but negative biopsies, were re-biopsied 16 months later and had definite mucosal damage. "One striking feature is the relatively few false positive EMA tests (51/4107). Furthermore, it could be that the false positive rate is even lower. In one of the studies, five of the 39 who had a positive EMA test and normal small bowel histology consented to rebiopsy within 16 months.21 All had a flat mucosa at second biopsy." (Found here: http://pmj.bmj.com/content/76/898/466) James, M. W., & Scott, B. B. (2000). Endomysial antibody in the diagnosis and management of coeliac disease. Postgraduate Medical Journal, 76(898), 466 LP – 468. Retrieved from http://pmj.bmj.com/content/76/898/466. Cataldo F, Ventura A, Lazzari R, et al. (1995) Antiendomysium antibodies and coeliac disease: solved and unsolved questions. An Italian multicentre study. Acta Paediatr 84:1125–1131 I have high EMA, and I want to take care of my health and do testing that is medically necessary... but if I'm going to fork over several thousand dollars (my insurance will cover almost nothing) I want to fully understand the clinical value of the test. So here's my question: Why isn't serology enough to diagnose? What can a biopsy tell that we don't already know. Is there a clinical need to know the extent of mucosal damage? It seems like the treatment is the same either way (even if it were to be stage 1 damage and just be latent celiac). I want to understand why this is valuable and what would be the cost of not doing the biopsy. Can anybody help?
  4. Thanks for the feedback! Gemini you're very right - surgery was a totally weird recommendation. My current doctor treated me without hormones because my TSH levels are normal. The doctor found that my Vitamin D levels were severely low and put me on a high dose. They climbed just out of the deficient range. I am very active and frequently outdoors, and they still only climb out of deficient If i'm on intensive VIitamin D supplementation. - In addition, She also suggested I a modified lower carb diet (I'm at a healthy weight, there was no reduction in calories, just an increase in protein and fat and a reduction in carbs, a low reduction, slightly above the recommendations for a diabetic), which the doctor recommended for PCOS. Both of these coincided correlated with a slight reduction in the anti-thyroid antibodies and a slight reduction in nodule size. My TSH levels have remained stable, so it was incorrect to say function, really just a reduction in the level of attack (but the thyroid levels are still high). The doctor that recommended surgery did so because "you're about to start college and you won't have time for monitoring, it will eventually fail. If we remove it now, you can just go on Synthroid and you'll never have to deal with the levels being out of whack." Yeah.... I was 18 then.... I'm now 27, but my Mom just went "NOPE!" and got a second opinion. This person was fine, but all he did was monitor to make sure the TSH levels stayed ok. They did, I just have a goiter and several nodules. The most recent endo. I've seen, who put me on intensive Vitamin D therapy and worked with me on the diet, felt like she was thorough (again minus completely dismissing the first celiac results. I think the D supplementation and diet were associated with a decrease (but obviously didn't and really couldn't reverse the outcome of the disease) in antibodies and nodule size because my TSH levels have yet to get out of whack. I also wonder if with fewer carbs, I ate less (thought still too much If I'm celiac) gluten, and that could have been more a factor in the correlation. Gemini- I'm glad that you have found a good treatment that keeps your levels where they need to be! I also really appreciate the welcome. Update: I have a referral to a GI specialist! I don't want to have Celiac... I love to travel, and I'm very social. I live in the US but my family is from Uruguay, South America, so I carry this Latin Cultural thing about loving to share food and seeing it as such a huge part of hospitality and community. I know that food in social settings gets hard to navigate...But I feel a sense of relief to think that I might have an answer to other health questions and that there is a way that I can stop or at least slow damage.
  5. I know this post is a year ago... however it is still on the first page of the travel section! I am from Uruguay, (South America) and I can answer this question for people that may look at it in the future. As a South American - I can say that the cuisine varies greatly. In cities, you shouldn't have any more than the normal amount of difficulty finding food. For example, in Montevideo, the city I am from, you'll have no problem finding dedicated entire Celiac stores. Meat is a large part of restaurant menus, so parilladas (similar in theory to steakhouses, would be very easy to navigate). Uruguayans do eat a lot of pastries, and just like in the states... Most mainstream bakeries are not gluten free, but like I mentioned there are places that specialize. In Uruguay, there is knowledge of Celiac and a large health awareness. Some of the foods can be costly, cost of living in general is not low. In large swaths of South America, the foods you mentioned - Potatoes, rice, meat, etc are abundant, as are fresh fruits and veggies. Avoiding corn does make it tricky. Peru can be a great place for non-gluten eaters. Peru uses very little gluten (they are the original quinoa eaters) but there is a lot of corn in the diet (and since you are corn sensitive, that would be a food you would need to navigate). Latin America spread over two continents! In this area you will find a great variety in cultures, cuisines, and knowledge of celiac. There is no reason why If you want to experience Latin America, that you have to rule out an entire region of the world because of Celiac. Navigating it will be different, but it is doable!
  6. That's a great question to ask. Thanks for arming me with good ones. I'm doing my research to be able to stand my ground. Ironically, my endo. Was the most helpful doctor I'd seen and my GP has generally not seemed to have a clue. I have PCOS and Hashimoto's thyroiditis, when I moved to the area and saw him, he was resistant to refer me to an endocrinologist (before I moved to the area, I'd already been seeing an endo. For three years for follow ups since I'd been diagnosed.) My endo. Was able to treat the thyroid antibodies well, they went down without synthroid or surgery (which previous doctor's had suggested). However, I think she dropped the ball on the Celiac blood panel (which I think endos should Definitely be more aware of). And my GP seemed much more aware on this issue. I think the takeaway is always do your research, advocate for yourself, and let second opinions fill in the gaps in knowledge some on your care team may have. (But also, ditch them if they don't know what they're talking about) Also, I live in an area with a doctor shortage... Thanks for the welcome to the community!
  7. Great Image JMG. Thanks for the feedback. I think I feel that the decision to push for further tests, and not shrug it off is the direction I want to go. And I think I may try the diet post-endoscopy, and see if I respond (particularly if my thyroid responds to the diet). Thank you All!
  8. Thanks for all your help. I got my new test results in. I'm surprised by how fast they came back. It is a different lab (different insurance) and fortunately, it is easier to read, but unfortunately, the results still seem a bit off from a clear cut answer. Gliadin DP Igg was elevated, along with my EMA. The tTG IgA was not elevated on this test, although it was equivocal last time but on a completely different scale since it was from a different lab. It seems odd that the tTG IgA is lower. Does anyone know anything about that? At the same time, EMA and Gliadin DP IgG are higher. I appreciate everyone's input. Until now, I have only been seeing an endocrinologist and my primary care. They both seem to be aware of celiac but not incredibly confident in navigating the diagnosis. My endo shrugged off the first test results as not that high. Obviously, I don't want to have celiac, but I wanted a second opinion. I was glad that my primary care wanted to at least look at tests again. I'm not sure yet what the next steps will be. Celiac Serology Profile with Reflex to Endomysial Antibody (EMA), IgA Titer by IFA NAME VALUE REFERENCE RANGE F Endomys. IgA Screen Positive A Neg. at 1:5 ("") F Endomys. IgA Titer 1:10 A Not Indicated (titer) F IgA 161 70-400 (mg/dL) F TTG IgA 10.7 0.0-14.9 (U/mL) - Reference Range: - 0.0-14.9 U/mL = Negative - >=15.0 U/mL = Positive F Interp Data See Note ("") - Test Negative Positive - Gliadin IgA 0.0-14.9 >=15.0 - Gliadin IgG 0.0-14.9 >=15.0 - TTG IgA 0.0-14.9 >=15.0 - EMA Titer >= 1:5 F Interp Test: See Result Note: ("") - RESULT INTERPRETATION: - Results support a diagnosis of Celiac disease. - TTG, IgA EMA,IgA AGA,IgA AGA,IgG Total IgA - -------- ------- ------- ------- --------- - Neg Pos Neg Pos N/A F Gliadin DP IgG 16.7 H 0.0-14.9 (U/mL) - Reference Range: - 0.0-14.9 U/mL = Negative - >=15.0 U/mL = Positive F Gliadin DP IgA 4.3 0.0-14.9 (U/mL) - Reference Range: - 0.0-14.9 U/mL = Negative - >=15.0 U/mL = Positive
  9. My favorite super quick snack for when I am in a savory mood is Beans and Cheese! 1/2 can of black beans shredded cheese (your discretion - I like cheesy goodness) 3 tbsp. salsa of choice Microwave the beans and cheese for about 2 minutes, stir them up. Top with salsa and any veggies you'd like to add. Eat with a spoon (it almost has a mac and cheese vibe) or with your favorite gluten free tortilla chips!
  10. Thank you! So unfortunately, my endo. moved away and I am in the process of finding a new doctor. I had an appointment with my primary care yesterday. He sent me for the reflexive celiac panel to retest. The test had been taken six months ago, and he wanted to see if the numbers had changed any. Hopefully, I should have some clarity soon. My main symptoms are Hashimoto's thyroiditis and PCOS (polycystic ovarian syndrome). Fortunately, I have hashimoto's (which means my antibodies are attacking my thyroid) but I have thyroid hormones in a very healthy range. I see these as possible symptoms (if I were to have celiac) because they are frequently associated. I do not have classic gastrointestinal symptoms. I regularly have loose stools, but not painful cramping etc., I didn't even think of those as abnormal until through a conversation with a friend, (obviously a very close friend) they said that they did not experience that and that was weird. I do have migraines regularly. It seems like the challenge with celiac symptoms is that they can be subtle and they can also be attributed to other things. For example, I know what my migraine triggers are. None of them are a quick repsonse to eating gluten. I know that for testing you should be on a gluten containing diet. I am considering trying a gluten free diet - like JMG suggested after testing is complete either way. It seems like I have at least some TTG antibodies and I would like to not cause further damage. Because my thyroid is subclinical, I don't think I'll be able to tell if that is helping for a long time, as I'll have to trial it for a while to see if it coincides with a change in my thyroid levels.
  11. Hello! I could use some help interpreting a blood panel I recently had. I have hashimoto's thyroiditis, and after I asked my Endo. About the increased risk of celiac in thyroid patients, she agreed to order the lab. I still have some questions that the Endocrinoligist didn't want to or couldn't answer. I was told that though it says "results support diagnosis of celiac" that it was too weak to warrant further texting. Obviously if I don't have it, I'll be thrilled! But after following up with research, I'm not sure I agree with the conclusion to just let it go. I have spent a while now researching and I understand what levels should be expected, but the lab results are presented in a seriously confusing way. I can't quite understand which parts are results and which parts are reference ranges. I also am not sure about which tests the endo. is referring to that would not warrant another test. I pasted the results below (this is how they look, no tables...) I could desperately use some help interpreting. I can get a second opinion, but that is costly, and I don't want to do it if it's not necessary! Thank you!! Comment: Chart Name Results Flag Ref Range Units Endomys. Titer 1:5 A IGA 154 70-400 mg/dL tTG IgA 8.1 H 0.0-7.0 U/mL Note Reference range: < 7.0 U/mL = Negative 7.0 - 10.0 U/mL = Equivocal > 10.0 U/mL = Positive Celiacsero Interp See Note Note Interpretive Data: Test Equivocal Positive Gliadin IgA 7 -10 U/mL > 10 U/mL Gliadin IgG 7 -10 U/mL > 10 U/mL tTG IgA 7 -10 U/mL > 10 U/mL EMA Titer = or > 1:5 Celiacsero Ind SEE BELOW Note RESULT INTERPRETATION: Results support a diagnosis of Celiac disease. TTG, IgA EMA,IgA AGA,IgA AGA,IgG Total IgA -------- ------- ------- ------- --------- Neg Pos Neg Neg N/A Gliadin DP IgG 5.4 0.0-7.0 U/mL Gliadin DP IgA 1.4 0.0-7.0 U/mL A=Abnormal H=High
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