Sarahsmile416

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Everything posted by Sarahsmile416

  1. So, I am two and half months in after being "labelled" NCGI. I was given Aciphex to control the extreme acidity and erosion of my esophagus and told that my other symptoms would start to improve after a couple months. Unfortunately, that has not happened. Instead, itseems my tolerance for foods has lessened. A month after my negative biopsy, I realized, I had become intolerant to dairy - something I had expected to a point given the state of my gut. However, I figured that would be the end of it, hopefully! Because of my dairy intolerance I thought I would try the So Delicious Coconut ice cream - definitely delicious and no ill effects. This past weekend I saw they had a no sugar added variety and because of my diabetes, I figured that might be better than the other. I tried it two nights ago and was okay that night but later on, not so much. As an experiment to confirm it was that food that had given me the problem, I ate it again...same issues. I'm trying to figure out whether it was some added ingredient in the NSA variety or if it is the So Delicious brand in general. I have heard people have had reactions to the carageenan in that, but figured I was okay because I haven't reacted to the yogurt that had it in it or the first So Delicious brand I tried. However, maybe like everything else, I am growing intolerant to that too. I guess my question is, is it normal to have growing food intolerances two months into the gluten-free diet? If so, why? All I know, is that it becomes very frustrating to have to keep adding foods to my do-not-eat list.
  2. Sarahsmile416

    Very Nervous About Trying To Get Pregnant

    Thanks so much! It just feels good to say it right now! Although I know I'm not out of the woods yet. I have my second HCG blood draw tomorrow and when I have the results of that, I will feel better. Until then, I consider it up in the air (despite the positive blood test). I am already tired all the time but yet when I go to bed I have a hard time sleeping. Very frustrating!
  3. Sarahsmile416

    Very Nervous About Trying To Get Pregnant

    Well, Monday morning I went in for a routine blood work and monitoring for what I thought was my AF...and they called me a couple hours later and told me I was pregnant! I couldn't believe it! Now, they are going to check my HCG levels tomorrow to see if they are doubling appropriately. After everything I have read on here and because of my pre existing diabetes, I am extremely nervous about miscarriages! I have always read that a symptom for many people during pregnancy is C - but since I am more prone to D due to my gut, I was wondering if people here had more C or D due to these issues?
  4. Sarahsmile416

    Gluten Free Protein Shakes

    I have never heard of these protein packets but I'm intrigued - partly because of the low carb options. This mighr be a stupid question, but what other ingredients can you add to the shakes?
  5. Thanks for the help. Hazelnut milk sounds really good - I've never seen that in any of the stores near me though
  6. Sarahsmile416

    I Dread Eating Out, Please Help

    I understand as well. Eating out can be a crap shoot for me...sometimes I have no problems and other times it can be a nightmare...and sometimes, yes, I am forced to order something small in order to stay safe from a reaction but then I leave hungry. The other night, my husband and I went to Champps for the Super Bowl - I ordered a French onion soup sans bread and within an hour was in the bathroom (apparently even the presence of cheese was enough to cause a reaction), then later, I ordered something I thought was safe - a steak, white rice and steamed broccoli - and less than an hour later, I was back in the bathroom. It can be very frustrating sometimes!
  7. Thanks, I will do that. I had two at work today and immediately had sharp pains in my abdomen...but didn't know if it was a gluten reaction or a chocolate reaction. Either way, not going to try that again.
  8. Reading this list, I didn't see Hershey's Special Dark Kisses - are they safe?
  9. Sarahsmile416

    Vomiting Phobia And Glutening?

    I am confused - can you clarify why you can't rule out celiac with a negative biopsy? Mine were negative as well, so I assumed that was the last word on the situation. I, too, have other AI issues so for that reason, I do not count out Celiac later on (I was pre-diabetic for years and then at 27, I developed Type 1 diabetes). I understand why after a blood test you cannot rule it out, but I always thought biopsies were pretty definitive. And CeliacMindwarp- thank you!! That gives me hope that perhaps mine will get better too - particularly the social anxiety!
  10. Sarahsmile416

    Vomiting Phobia And Glutening?

    That is very interesting - thanks for putting it up there. Even though it specifically links anxiety and celiac, I would assume the same could be found, maybe to a lesser extent with NCGI? I have had anxiety almost all my life, from my phobia of throwing up to your more garden variety social phobia, I will be interested to see how staying away from gluten affects it .
  11. Sarahsmile416

    Vomiting Phobia And Glutening?

    I, too have an intense phobia of vomiting - and I'm so glad you brought it up, because every time I have been glutened or react to dairy, my phobia rears its ugly head. It's bad enough having panic attacks being near people I am afraid will throw up or have a virus, it's that much worse constantly being afraid when I am glutened that it will happen. Thank goodness it hasn't happened yet and I hope it never does! Of course, I am only a month into it, but so far vomiting has not been a part of my cavalcade of symptoms!
  12. Sarahsmile416

    Very Nervous About Trying To Get Pregnant

    I have to say reading your posts have certainly eased my mind a good deal! I am gluten intolerant but have a great deal of inflammation in my gut so am going both gluten free and dairy free and have been so for about a month. On top of this, I have Type 1 Diabetes and PCOS so definitely have an uphill battle ahead of me! My husband and I have just started trying and while I have a reproductive endocrinologist who is helping me along the way, the gut issues have caused me a little worry in terms of both getting pregnant and carrying to term. I am thankful for posts like these because they certainly help when I am feeling discouraged!!
  13. I have vitiligo in various spots on my body - I have pretty much come to terms with the spots that have been there since I was 13 going away, but I have noticed improvement in the most recent spot while on this diet, which makes me very happy. Hopefully, in a couple years it will be all but gone!
  14. Question for those of you in the know - does the presence of more than one autoimmune disorder leave one more susceptible for another? For example, I tested negative for celiac (blood test and endoscopy), but I have two other auto immune disorders - does this mean that the possibility of developing celiac in the future is greater for me?
  15. Yes, the Brunner's gland hyperplasia was the most glaring thing I saw. I looked it up and saw it was a benign tumor in the duodenum - which didn't really worry me just confused me that my doctor wouldn't tell me that. And yes, mushroom, I agree, the definitions of those words do tend to lead to more questions than answers, haha.
  16. Want to clarify - diagnosed myself a month ago after negative blood tests and negative biopsy as NCGI and have been gluten free since late December. Went to the doctor two days ago and was pleasantly surprised. Apparently it is just her nurse who is a moron...I did find it funny that the nurse wanted as little to do with me as possible after I excoriated her on the phone. The doctor on the other hand, when I told her I was still having problems she said that I might easily be gluten intolerant (which, duh, but from what I have read on here, she seems to be one of the few doctors who acknowledge it!) and given the amount of inflammation I showed I should give up dairy for awhile. I was just very happy to hear my doctor parrot what I have been reading on here! I have also been doing my food diary all wrong - only recording major reactions and not minor ones, whoops! Anyway, I asked her for the pathologist's report and she gave it to me. Shorter than I expected (2 pages), but shockingly some things were done that I did not expect (they DID test for eosinophils, which were not present). Here it is, in most of its entirety: Clinical impression: Abnormal mucosa in duodenum; normal mucosa entire stomach; erythematous esophagus. Gross description: Received in zinc-formalin are six fragments of red-tan soft tissue measuring 0.9 cm x 0.6 cm x 0.2 cm in aggregate. Received in zinc-formalin are two fragments of red-tan soft tissue measuring 0.4 cm x 0.3 cm x 0.2 cm in aggregate. Received in formalin are two fragments of soft tissue measuring 0.3 cm x 0.3 cm x 0.1 cm in aggregate. Miscroscopic description: Small bowel mucosa with foveolar metaplasia and Brunner gland hyperplasia. Giardia and other parasites not identified. Foveolar cell hyperplasia, edema of lamina propria and minimal inflammation. No evidence of intestinal metaplasia, malignancy or dysplasia. H.pylori not present. Esophageal mucosa with basal layer hyperplasia and elongation of esophageal papillae. Eosinophils are not present. There is no columnar mucosa present. Final diagnosis; Duodenum, Biopsy with Cold Forceps: Chronic duodenitis with focal foveolar metaplasia and Brunner gland hyperplasia. No evidence of celiac sprue. Giardia not identified. Stomach, biopsy with cold forceps: Reactive (erosive) gastropathy Silver stain negative for H.pylori Distal esophagus, Biopsy with cold forceps Hyperplastic squamous mucosa most consistent with chronic reflux esophagitis. There are no eosinophils present. No evidence of Barrett's esophagus; no glandular mucosa present. Phew!! Anyone able to decipher the medical speak for me? Thanks!
  17. Thanks, Opa. Formally, I was diagnosed with gastritis, esophagitis, and duodenitis...so I knew about the inflammation in all of those places. What I really wanted more information about were the words mucosa, hyperplasia and those types of medical lingo. Since I am not a doctor I don't know what those things mean in the context of my esophagus, duodenum and stomach. Additionally, I wasn't sure if the sizes of the biopsies taken were important or just something usually noted during the biopsy.
  18. Sarahsmile416

    Dairy And Ncgi

    Thanks for the advice regarding the yogurt...I don't think I will try it quite yet, but when things start to heal, I will give the plain Fage a try...although the taste kind of scares me...maybe as you said, I'll add something I know I'm okay with to mask the taste...or just find something else. I actually had a sweet potato yesterday with butter and while I had some mild discomfort, there was no running to the bathroom lime episodes for me, so I consider that a win, which is a good thing because I'm not sure what I would end up using as an alternative to butter!
  19. Hi - Was DX about a month ago as esophagitis, gastritis, and was told I did not have celiac. Of course, knowing myself and my reactions to gluten, I went gluten free almost immediately following the endoscopy. I have been doing well since then most of the time. Because I have read on here about avoiding dairy if you are Celiac or NCGI, I have done my best to do so. But for me it is hard because my reactions are very varied. For example, I can eat sugar free tapioca with no problem even though it is milk-based and can eat small quantities of butter as well. However, sour cream leaves me down for the count! I have been trying to eat Fage as I did before my DX to varied results. I ate a blueberry 0% fage and felt some minor cramping and a little gassy, but today, I had a strawberry fage and I have been in bed since 1pm with horrible abdominal discomfort and D. My question is two fold: 1) what is it about dairy that doctors will tell you to avoid it when you have gut issues? 2) why am I having reactions to some forms of dairy and not others? I think that's what is keeping me from avoiding all forms of dairy at this point...can anyone help?
  20. Sarahsmile416

    Dairy And Ncgi

    Hehe! And ooh a pudding with bananas - I will have to check out that section! Thanks!
  21. Sarahsmile416

    Dairy And Ncgi

    Oh trust me, not about to touch soy milk. I was drinking flax milk for awhile which I really liked. I think I need to find some non-dairy substitutes for pudding because after what I have heard about lactaid pills, I don't really want to try them...besides I have enough meds and vitamins already, I really don't need to add another!
  22. Hi! I'm 31 years old and just joined the board. I have Type 1 Diabetes and am pre-diagnosis but will be having an endoscopy soon so hopefully will know more. My husband and I live in Middlesex County in NJ but I have recently moved to NJ and am looking for people like me to talk to. My husband has no food allergies or issues to speak of, so it's just me. Kind of gets isolating from time to time particularly when I'm dealing with symptoms that people may be able to sympathize with but cannot truly empathize because they have no similar issues. Would just be good to talk to someone while I am waiting for more information...
  23. Sarahsmile416

    Dairy And Ncgi

    Thanks, mushroom! Appreciate the reply and the explanation. It does make sense...my doctor recommended today that I stay off dairy for awhile. Like an idiot today, I tried my tapioca which I previously had been okay with and 5 minutes later, I got sick. Well, I guess if I needed proof, I got it - in spades!
  24. Sarahsmile416

    Any New Jersey Celiac's Out There?

    Out of curiosity, where in RI do you live? I know of some folks near URI...
  25. Sarahsmile416

    Any New Jersey Celiac's Out There?

    Thanks so much for the invite, Loey!! I certainly appreciate the thought! Wish I could come but the little girl I take care of is having a BD party the same day and I promised her I would come! Sorry to miss it though