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Everything posted by ironictruth

  1. About once or twice a month I eat these. After still having some damage on my year follow up endo, I am looking closer at what I am eating. I just noticed that they contain isolated oat protein. What is this stuff? I assume it is just as subject to cross contamination as regular non-certified oats?
  2. Wow. I feel dumb for not looking on the website. Lol. Thank you for the link. Eased my mind.
  3. I have a hankering to make carrot bran muffins (after I get over my current tummy issues). I found a gluten-free recipe but it calls for Bob's oat bran. The package says gluten-free but the back ingredients list does not indicate certified gluten-free oats. I sometimes eat certified gluten-free oatmeal and have no trouble. What's the deal with Bob's?
  4. Can anyone tell me about their experience with symptoms after iron infusion? My doc wants me off of iron pills as they may be contributing to my continued abdominal pain. My ferritin is back up to 42 which is awesome, but not near my baseline. Since I also am a distance runner now, we knew that if I stopped the pills that it will quickly tank (I was on a high iron diet too). So I had an infusion yesterday. I feel AWFUL today. I look 5 months pregnant, feel weird sensation in my stomach, loose stools, my whole body aches. I thought I was going to pass out at work this morning.
  5. Yes. That assay should be the one they repeat (sorry for my late response, I see it is Friday), not the one you initially had. Just so you know, my brother has biopsy damage and was TTG and EMA negative (no deamidated gliadin was done for him). I only tested 1 or 2 points elevated to deamidated gliadin IGA (DGP herein) twice. Both major Celiac Center I spoke with dismissed the result as it was so low. I was then given a combined assay for DGP (IGA and IGG) which came back weak to moderate positive three separate times. HOWEVER, the DGP tests were NEGATIVE during the same time period when separated out. I have had that damn blood test more times in the last two years.... Eventually I went out of state to a celiac specialist, did another gluten challenge and the biopsy found damage the second time around. Even THEN the pathologist initially only read a slight increase in a particular cell with no villi damage. My doc re-cut the samples and re-read it at the Center as having damage consistent with celiac. I had no idea they could even do that and was totally shocked when I got the phone call. My specialist is leaning toward official celiac but we have to wait for the year biopsy follow up before it is definitive. I hate to tell you this, but they put me on a 12 week challenge at the specialist because they did not feel the 6 week challenge my local doc had me do was long enough. My symptoms the first challenge also did not really kick in until 4-5 weeks. That is actually fairly common I am told. We often think it is immediate, and it is for some, but not all. I hope you get some answers soon. It was difficult for me to accept because I did not feel better on a gluten free diet right away. Even now, months into it, I am having horrible upper right side pressure today, tenderness to the touch in the right abdominal region and tender right ribcage. BUT, I think even if your tests are negative, you could try the gluten free diet and see if you feel better. It sounds like you already do feel better on the diet.
  6. This will be fun. My son will enjoy doing the different colors and it looks easy.
  7. Anyone know of a good EASY sugar cookie recipe? Anything out of a box or bag would be better. We need some icing ideas too! My 6 year-old will be making gluten-free cookies for santa this year...
  8. They told you that you were 100% celiac free?!!! It is hard to make out what test you had done but I am GUESSING It was a dual TTG/DGP screen. I had a dual DGP test, but my assays always separated the TTG from the DGP. The problem with the dual screen is that you have no idea what is positive. TTG can be positive in other diseases and so can DGP. Recent studies suggest that DGP is not as reliable as once thought. In fact, there are studies of young children having positive DGP screens which go on to become negative DESPITE continuing on a gluten containing diet. Your assays does not distinguish so we have no idea what is causing that positive. My doctor, who is a leading celiac researcher, is not a huge fan of these combined screens. That being said, they are not without total value obviously. And it is interesting that your numbers went down on a gluten free diet. Was the SAME screen done for your second test? Do you have copies of that? Enjoy those donuts for awhile longer (please have a chocolate covered white cream filled for me), ask to go to a lab that separates the assays so you are having: Total IGA, DGP (both IGA and IGG), TTG, and EMA. Consult with a dermatologist to see if they can biopsy the rash if it occurs as it could be DH. This would be a diagnosis of celiac and you could avoid the endoscopy. If your insurance covers it, do the genetic test. But do nto go crazy spending out-of-pocket fudns on that if not covered. The scope is not crazy invasive. Christ, I think I was scoped like 4 times in under 2 years. The meds make me queasy but we resolved that the last time. Oh, and do any of your life insurance policy planning BEFORE you get the official celiac diagnosis on your record. Keep us posted!
  9. So, I know Wegmans is awesome about gluten-free labels. The ricotta they use does not have a a gluten-free label and in one of their online recipes for gluten-free lasagna they actually use Belgioioso ricotta. That being said, they will not label a product as gluten-free unless the manufacturer can guarantee it. I did contact the company but was hoping someone here might have had the Wegmans ricotta before with/without issues. It contains vinegar. Am I right to assume this is NOT malt vinegar if it simply says vinegar? I guess what I am wondering is if it actually is MADE with gluten containing ingredients vs possibly being cross contaminated with them. Thanks!
  10. Thank you Ennis! You always have great nutrition advice. I bought those nibs. I do use magnesium a couple of times of week and am stocked on pumpkin seeds as well as coconut water. I may want to increase the magnesium though.
  11. By far probably the best advice i have gotten overall. I have been so frustrated with gluten challenges, the diet and the whole process, I have not been as cautious as I could be. In part because the symptoms seem so not text book. Granted, I am new to running and just did my second half out if three in nine weeks. I am busting my butt to make sure I get my nutrients. If I do not see another carb for at least two weeks, I would be thrilled. But I have not been as cautious as I know i should be. And Fasano is my doctor. I experienced a lot of wax and wane of symptoms and no "omg this is certainly a glutening". So it is tough for me to know what is what. But it might be best, at least through my next and last race on Turkey Day, to be more cautious. Maybe we should not have celebrated dinner out tonight, even with grilling wait and cook staff. Thank you!
  12. Thank you! Yes, my intestinal damage was more mild Marsh 2-3A. But I knew with the running on top of that I would need to keep it checked. I honestly thought perhaps I was taking TOO much and this was causing issues. Clearly not the case I guess. I was doing 65 mg with vitamin c most days and some days I alternated between a lower dose 2x a day as you have done. Plus a high iron diet. Cannot say enough good things about Tolerant red lentil pasta. 50% rdv in one serving. And who only eats one serving of pasta? I totally forgot about liver. I loved liver as a kid! I bought some liquid stuff as I read its easier on the tummy. I still feel pretty poorly so am always looking at ways to improve my symptoms. I keep hoping I will find something that explains the flu like symptoms that wax and wane but never turn into the flu. I am nervous this morning. I felt horrible yesterday, slept terribly and have my 2nd half marathon, this morning. And its pouring now!
  13. I bought some liquid yesterday, which I read is actually easier on the stomach than pills anyway. I am fortunate that I haven't had any major issues with deficiencies. And that may also be in part Because I have more mild damage and I also am obsessive about making sure I get enough of the nutrients into my diet and in protein shake form. I am sorry about your insurance Ennis! I actually was concerned that I might have to pay for pocket For the test at one point and I called the lab and I want to say it was like under $40 for the test. But don't quote me on it. So you might want to shop around if you're curious.
  14. I've been an iron supplements for over four months because my ferritin was starting to border on too low. I knew the range I was in was no good for somebody trying to run long distances. Anyway my iron, ferritin and saturation have been tested three times since May. I was unaware that my one doctor had run the test back in August until today. I'm happy to say my ferritin is coming up very nicely. however my iron and saturation are dropping. they are still within the normal lab ranges which is great. I just don't understand why they've been consistently dropping shouldn't they be going up now that I'm on iron? I have some gastropathy and I'm pretty sure the iron pills were making it worse and creating more abdominal pain and nausea so I asked my doctor to be tested recently thinking I'd be safe to get off the supplements. I already eat An iron-rich diet. I guess I'm just thinking that if I stopped some kind of iron supplementation with iron levels and saturation dropping the ferritin Is going to get sucked up pretty quickly and I'm going to be right back where I started. I know it can happen quickly too because I went from normal hemoglobin to very slightly anemic once in 24 hours without eating. It was horrible. I can't imagine walking around like that for months. I have been very fortunate. Anyway, anybody have any experience with serum iron not elevating after starting iron supplements but your ferritin being within normal range or increasing?
  15. No ulcers in April, but yes, I think iron pills are contributing. I do not feel super hungry but red lentil pasta, ground beef and kale pasta sauce is on the menu tonight! I am only doing halfs. Was hoping I can maintain my nutrients. I eat a lot. No weight loss. Will see what the doc says about rechecking it. Maybe it is something else.
  16. Thank you Ennis. I do take magnesium. I forgot I have a certified gluten-free hot cocoa with 20% iron in it. I will try the nibs and pea protein! I think my drinks I mix with water are plant protein based.
  17. The flu aches, performance slowed and dizziness. But I am not sure if that is the cause, hence my asking the doc for the panel again. Waiting to hear. Hoping I can can the iron to see if it helps my tummy. My supplement had vitamin c in it.
  18. So, my ferritin levels went from 74 to 20 despite being on a high iron diet. Nothing alarming, but since I was training for a half marathon, and now a second one, I figured 20 was getting close to the danger zone and I started to supplement with iron back in May. My primary gave me the thumbs up. I have had gastritis in the past and a pill cam in early August caught some mild gastropathy. Ironically, I was on liquid iron the last time I had gastritis. Never had a single bout of it until a few months after my first gluten challenge two years ago and now I cannot get it to heal all the way. I continue to have pain and nausea in my upper right quadrant that is often associated with eating but not always. Sadly, running a hard run also worsens it for a bit. I switched to low acid coffee, started zinc carnosine, and zantac before running two days ago. I have developed flu like aches, episodes of dizziness and my running is suffering horrible. I eat, sleep, take vitamins, eat more and drink enough water. My ferritin went up into the 30's in August and I just asked to have it re-checked thinking that perhaps I am getting TOO much iron or maybe the swing upward was temporary which has happened to me before. I do not know if my doc will agree to re-check it. I hope so. I have a recent diagnosis of celiac, just ran a half marathon, and was hoping to run another but the flu like feeling is not helping that cause. Anyway, I am ranting. I started wondering if perhaps the freaking iron pills (they are gluten free) could be adding to the misery of my stomach not healing and then I found this recent article: http://www.gastrores.org/index.php/Gastrores/article/view/804/876 Set aside my wondering if the woman in the first case scenario actually IS a celiac, the article makes me think we need a better way to get iron into us stomach-intestinally challenged individuals. The University of Chicago Celiac Center claims that as many as 50-60% of celiacs have some type of gastritis when diagnosed. I already eat red lentil pasta 1-2 times weekly which is very high in iron. I eat salad almost daily during the work week. Red meat twice a week. Mixed plant protein nutrition drink twice a week. I am at a loss for how else to increase my iron stores and maintain them without subjecting my tummy to further insults. I am open to any suggestions!
  19. So....somewhere your pathology slides are in storage. You can seek a second opinion and have the slides sent to be read. Mine were sent from Upstate NY to Boston and back. I also said to heck with it and did a gluten challenge. They said 3 months. I was so used to feeling poorly that it really was not any worse for me.
  20. My doc is a celiac specialist and I was told that you do not always react right away and that the symptoms ebb and flow if you wil Your doc should have kept you on gluten for blood work. How long have you been off? The inflammatory process releases cytokines which can cause pain anywhere. Did they do a stomach biopsy too? They never did for me but a pill came picked up healing gastropathy which I aggravated recently. It can take a long time to heal your gut and you may have some funky symptoms during that time.
  21. We do not have gluten in my home other then the bread he Uses to make school lunch sandwiches. however I am divorced so he spends a good part of the week at his dad's as well where he can eat whatever he wants. My son is a terrible eater and has been very picky since he was 2 years old, he's now 6. Up until recently he literally would only eat 5 things. He once vomited all over my kitchen after I insisted that he try watermelon. In the last several months he's been expanding what it is that he will eat however. Unfortunately still no fruits or vegetables, I have to sneak those In via juice. it is actually one of the reasons that I am not in a hurry to get him tested. I have to return to Boston to see my specialist next summer and we are going to take my son with us then for testing. so it buys me time to expand his food list just in case we have to take half of it away. my brother's children however, because he's a farmer, have always eaten a lot of Whole foods. his house is totally gluten free but his mother-in-law will take his daughter out for treats occasionally. She does not seem to suffer any adverse reactions. My nephew on the other hand was always constipated and bloated when he was on gluten. The kids will literally just walk out into the garden and grab a cucumber and start eating it basically. I'm not even exaggerating. I am envious that his kids will do that and I wish that I had tried harder with my son when he was younger instead of always defaulting to what he would eat. I know my nephew will verbalize a memory of not liking some of the changes that were made initially at their house, like with the gluten-free bread. But then he will say he likes it now. So I think kids do definitely adjust their preferences. unless of course you're my son, and then the neighbors are wondering whether or not they should call Child Protective Services because There is an awful lot of screaming next door at dinner time.
  22. Funny though, my brother and I were just discussing this. He has celiac and both his son and him are gene positive. Both were TTG/EMA negative but never tested for DGP. My brother had damage on endoscopy. They have not scoped his son. He feels his son is symptomatic but not his daughter. I have conflicting positive and negative DGP, recent damage on biopsy and negative TTG/EMA. Two years ago my son had negative TTG and DGP. No EMA. I plan to have him gene tested and full antibodies screened again. My brother has opted to have his children follow a gluten-free diet. I am currently allowing my son a normal diet. But my own chaos with diagnosis, and my brother's too because he was TTG negative, makes me ultra sensitive to the possibility. My son's ped doc has a daughter who was recently diagnosed with celiac. it was in the family so her mom, my son's doctor, suspected it as soon as she started getting digestive issues and losing weight. she pretty much told me that she was glad that they didn't put her on a gluten-free diet as a child so she can enjoy eating the things she wanted to Throughout her life. I have to say I agree to a large extent. There are many diseases that we could get At anytime. we cannot change our lives for that reason alone. However that being said, my family has both thyroid disease and multiple sclerosis as well. I know all too well the naive statements and assumptions that doctors can make in the face of science still working to find conclusions. There are other types of TTG the doctors don't typically test for. I am well aware of this, and sensitive to it. As a parent, I'm going to allow my son to continue on a normal diet for now, but we are going to pursue testinG And I'm going to watch it very closely.
  23. I had a pillcam done two and a half months after I went gluten-free and it only showed gastropathy. three and a half months before the pillcam and endoscopy showed damage consistent with celiac. That damage was after a 10 or 11 week gluten challenge. prior to that I was gluten-free for a number of month, though probably not cautious enough. endoscopy during that time showed only inflammation. prior to the above, I was gluten-free after some mild positive blood work and went on a six-week gluten Challenge and my biopsy was absolutely perfect. my third endoscopy was initially reAd to show an increase in a certain cell only and then went on, upon further inspection by the specialist, to show damage consistent with celiac. it was the continued issues after to endoscopIes that finally made me resume eating gluten for a longer time and going to see a Celiac specialist out of state. it's been over three months and I'm still having symptoms.
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