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About rcheltrvel

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  1. I have 20 years of gluten symptoms, have a history of Fibromylagia and CFS. I went to a new doctor, a nurse practitioner actually. She wasn't satisfied with just a Fibro/CFS diagnosis and decided to test me for Celiac and I tested positive on a TTG-IGA antibody test. My NP diagnosed me with Celiacs without any further testing and told me if I want to live, stop eating gluten. I decided to go for another opinion and went to see a GI. I had a negative upper endoscopy and set of negative genetic blood tests. Celiac was ruled out and non-celiac gluten sensitivity was given as my new diagnosis plus Fibromylagia.

    I am not 100% convinced gluten is my issue...

    During all this testing, the GI found I had Gastritis, inflammation in my stomach and bleeding. I was put on prescription Prilosac. This was found to be caused by years of use of non-steroid anti-inflamitories. I stoped the anti-inflams and started taking the Prilosac. My stomach felt better at first, I am also 100% gluten free now. It's been about 4 weeks and I'm not better. All of the sudden, after eating certain meals, I started having symptoms again. First it's massive upper stomach pain, like a knawing pain, like someone is stabbing my upper stomach with knives. Then I get gas, burping, then a little while later it almost stimulates my constipation and I go to the bathroom. Not diareah but I go and it's loose, normally I never go. I also get a sour taste in my mouth almost every time I eat.

    My struggle now is trying to figure out if this stomach pain is from me being so super sensitive to gluten cross contamination (the stomach issues seem to happen every time I eat out or get takeout) or if it's from the gastritis not yet healing. The stomach pains seem to only happen at a later in the day meal like lunch or dinner, possibly the Prilosac is wearing off by the afternoon? So confused and just want to figure this out. I called my GI and he added a second dose of the Prilosac to my daily regimen. I have taken it the last three days. The first day I took the second dose, I still had the stomach issues. Yesterday and today, I had no reaction. Yesterday I ate out at a restaurant and today I got gluten free pizza take out. I was fine. I guess if I can have a week of consecutive non-reactions, I can test my stomach with gluten and then I would know.

    I am looking for any opinions about this and also, if you have Celiac or non-Celiac GS, when you get stomach pain, is it in your lower stomach or is it in your upper stomach?


  2. statistics being.....those two genes account for less than one hundred percent of celiacs, and other genes are included in Europe....especially Dq9......

    I wonder if the wine tasting issue was contamination with the crackers that are there to clear your palate?  not that you ate any, but maybe crumbs?

    And no to the cracker thing. I brought all my own gluten free crackers and never touched anything else with wheat.

  3. I happen to live on the eastern end of Long Island, NY, gateway to the Long Island wineries (we have over 70). It's a big thing here and my husband and I go all the time, especially when visitors from out of town come to visit. This past weekend we went and at every winery, I asked about the glue/wheat thing. Most people said they didn't know but a few knowledgable people working there were able to confirm that they do use wheat in the paste or glue to seal some of the barrels. They have to use something that is edible to seal the barrels I was told, so they use a wheat paste sometimes or a glue that is all edible which includes wheat. It would make sense as to why I react to some wines and not others. I had wine from a steel barrel and nothing happened to me. I had one from oak where they used the paste and I did react. I am just going by what I was told and my symptoms. When you are finally gluten free, you can really see what gives you a reaction. I will keep testing alcohol and post my findings here :)

  4. Well, all my tests are in. Positive TTg-IGA, negative biopsy, negative genetic markers. After being gluten free for over 3 weeks now, some of my neck inflammation and pain has subsided, although pain still there, migraines are under control, a little less tire (only a little), a little more energy (not that much) and can think a little clearer (but not that much).

    So far I have been glutened two times. Once from an accidental bite of a rice cake with wheat, and once from wine tasting at a few different vineyards. Turns out I'm super sensitive to even one bite and even alcohol. I can't drink Vodka anymore and many wines bother me but not all. I believe the reaction from the wine is dependent on if they use wheat in the glue to seal the barrel. I keep trying different wines and one night I had three glasses of one white wine and was fine. I am keeping a symptom journal and there does seem to be a pattern.

    30 mins after ingestion of the gluten, atomic gas, I can clear a room. And I rarely have noticeable gas. Then extreme fatigue followed by serious rage, neck pain (once a mirgaine started after the wineries but I took mirgaine med and was OK). The next day and that night, I go to the bathroom (normally I'm constipated but one bite of gluten seems to get my system going I guess). Day one the bathroom stuff is normal. Day two it's soft and then finally diareah. When I wake in the morning my eyes circles are blacker then ever and I get a lovely hire under my right eye.

    I was truly shocked that I didn't have Celiacs and still have no answers as to why my antibodies were raised, cholesterol raised, low vitamin D, liver enzymes raised, iron ttcb raised, etc.... Obviously I have NCGS and I also have Fibromyalgia but can all of these issues really be from NSGS only? And what about my chronic chills, exercise intolerance and raised antibodies?

  5. Hi Lisa,


    How do you know from what I wrote that there were only two samples taken from my small intestines? When I was going in for the procedure, right before I went under, I asked the GI if he could please make sure he takes 6-8 samples. He says, don't worry, I take plenty. When I first read the report today, I also thought he only took 2. But then my mom (who also read the report) pointed out that under each of the 2 containers, it says "multiple". So could that mean he took more then 2 samples?


    My uncle is a big pathologist in NYC, I have a call into him to help me understand what he actually took, not sure if it will help.


    So if I stay gluten free for 6 months and my level comes down, that would prove Celiacs?


    Thanks, Rachel

  6. Hi,

    Well 10 days later, I got my Upper Endoscopy report, so confused at this point and disappointed. GI said my Villi look fine, I do have Gastritis with bleeding, as I mentioned. He said probably from years of anti inflams. He said because I have the positive iGG-iGA test, symptoms and a negative biopsy, he now wants me to take the genetic blood test (HLA-DQ2 & DQ8). He said my neck, cognitive, chills, migraines, fatigue, exercise issues, weird allergies and everything else is probably not from any of this. More confused. On top of everything else, he wants me to come back for another procedure, a Colonoscopy, because one doctor I didn't like said I had a trace of blood and he wants to make sure it's nothing more then my stomach bleeding and hemroids. Great! When I got out of the Endoscope, he told me I didn't have to get the Colon procedure because the blood was coming from my stomach but now he changed his tune. I really hope he is doing this to make sure I don't have cancer or something and not just to take my money for another producers. He is a very reputable GI.

    Anyway, here are my test results...I asked him to make sure he takes at least 6-8 samples and he said he would. It's hard for me to know from this report how much he actually took and he really didn't sit down with me and show me the report. He just told me, then I asked for the report on my way out.

    1) Duodenal Biopsy (Part 2) - no significant histologic abnormality. No evidence of villainous blunting or abnormal inflammatory infiltrate.

    2) Duodenal Biopsy (Bulb) - predominatly gastric body mucosa with patchy mild nonspecific chronic inflammation; consistent with ectopic gastric rest.

    3) Stomach Biopsy (Antrum). - minimal nonspecific chronic inflammation. A diff-quick strain is negative for helicobacter organisms.

    4) Stomach Biopsy (Body) - no significant histologic abnormality. A diff-quick strain is negative for helicobacter organisms.

    There were four parts of my stomach tested I'm assuming. 1 & 2 say they took "multiple" pieces of soft tissue ranging from .1 to .3 cm. 3 & 4 said they took one from each. Four cassettes of specimens all together.

    What does this all mean?

    Thanks, Rachel

  7. Actually, my GI doctor did not confirm Celiacs at all. My regular doctor did based on my 20 year history of symptoms, some deficiencies, raised liver and cholesterol. etc.. plus a positive Celiac blood test. The GI doctor did the endoscopy and said I have a large amount of inflammation and bleeding and he said it could be worsened by possible Celiacs but he said it is from my long term use of anti-inflamitories (for my neck). He said he didn't see anything that could confirm Celiacs but he took at least 6 samples (as I was advised to make sure he did so and I did) and I get my results late next week. He said you really can't tell by the eye. I do not have any ulcer. Just bleeding stomach (lovely!).



    Anyway, doctor gave me small dose of pain relief for my neck (Neurontin) and I started taking vitamin D in a large, prescription dose and also Prilosec. Today is day 2 of Gluten free and I have NO neck pain for almost the first time in my adult life and my stomach pain is completely gone. Like a miracle. I won't say I am cured, but I am surely happy and on my way.



    Today is actully my 42nd birthday and also the first day of my new life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  8. Made it through my endoscopy today, it was a nice sleep! I was relieved yet crying when I woke up. I have been having so much upper stomach pain since this two weeks of torture started, I thought I could have an ulcer. No ulcer but I do have an inflamed stomach (Gastritis) with a lot of bleeding. The Gastro said its from the anti-inflamitories I have been taking for the last few years. While I believe anti-inflams can cause this issue and knew long term use could do this, I think it's so weird that the intense upper stomach pain started the minute I cut out gluten and started adding it back. Coincidence? My regular Dr. today said I just recently started bleeding. So confused!

    Anyway, have to wait 10 more days for my Celiac results. Dr. Said he didn't see anything that looked Celiac but said that doesn't mean it's not. Any imput on this?

    At least I can breath and I had my first gluten free day in two weeks and am so happy, even know I am still nursing my gluten hang over from yesterday!

  9. Well, tomorrow I get my endoscope. Finally. I can't believe I'm saying this but I pray I am Celiac and can finally put closure to my search for answers. Yes, I feel like dying today, but I got to binge on Girl Scout cookies today! For my last time ever, no matter the outcome. I did discover on this gluten challenge that when I eat gluten at night, I wake in the middle of the night and in the morning with severe neck stiffness ands in and swollen, black eyes. I can't eat gluten in the morning because then I can't work. So I do it mid afternoon and just suffer but at least it's not as bad. Today I received some new blood tests back from my Gastro, I may have some low iron going on from what I can tell but you tell me...

    Total Iron = 119

    Iron TIBC = 495

    Transferren Saturation = 24

    Ferritan = 13 (range is 12-300)

    Not sure of the other ranges as I don't have the tests in front of me.

  10. Thanks. I will try eating it only at night, I am going to try tonight. But I have this horrible neck issue that is worst upon waking and I am starting to suspect that my old late night gluten/carb snacks could be making me much worse in the morning, I will try it once and if it's not good, I will try for lunch only. This way I can maybe get some work done in the morning and maybe it will tapper off by night. But who are we kidding, it will probably not matter that much. I will have a half for you tomorrow Lisa, today I am taking my 5 year old out for pasta. Thanks for the advise about keeping the processed non-gluten foods to a min. I think when I went off for the first five days, I was eating so many non-gluten carbs that my stomach wasn't so happy. I will try to stick to whole foods as much as possible. Last night all I wanted was a huge hamburger. Red meat, that is all I wanted and I feel like that again today. My doctor is testing me now for low iron, I wonder if that could be why I am having this huge craving. Did you ever have low iron?

  11. Thanks for the advice, I will tell my doctor and gastro about this. I actually was diagnosed by my regular doctor already with Celiacs based on all my blood tests and years of symptoms. But for my own piece of mind, I have to have this test. I have a five year old daughter and a mother with similar symptoms. I have been told so many things by so many doctors over the past 20 years that I need something concrete, you know? I know I have this sensitivity, just want to know if it is definitely Celiacs or a sensitivity. I need closure if this is what has been wrong with me all these years. It's hard to explain. I will just suffer, just glad there is somewhere I can talk about this, my family is sick and tire of hearing about it I'm sure! It's only 5 more days.

  12. Oh yeah, I wanted to add, I went to see a Psyotrist the other day for my chronic neck pain, headaches and stiffness who is part of a large neuro surgery group at a prominent hospital here where I live. He said despite my minor two herniations and minor arthritis, he thinks all of my pain or most of it is being caused by malnutrition/vitamin deficiencies. He said he would be shocked if my endoscopy came back negative. I couldn't believe my ears. You know how many years I have gone to this doctor and that doctor for my neck? Crazy!

  13. Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.

  14. Thanks. Sorry, I should have worded it better. I know there is no cure but unlike many other autoimmune, there is at least a way to repair to some degree and feel better. You can't do that with let’s say Rheumatoid Arthritis or Fibromyalgia. With those there is no real end, no relief that actually fixes something, only band-aids. As I understand it, removing gluten from your diet actually repairs you somewhat and that has to feel better at least!

  15. I have had symptoms of Celiacs for over 20 years but am not yet diagnosed. I had a positive Celiac panel and am waiting for my endoscopy. I have had progressively worsing black circles under my eyes over the past 3 or 4 years. I recently took gluten 100% out of my body and five days later was forced to add gluten back in, for testing purposes. Since going back on gluten, my body has seemed to have gotten worse. My black circles have significantly gotten worse over the two days and now on top of the circles, I now have what looks like an obvious allergic reaction of red and puffy, almost like bee stings, under each eye. Worse on my right eye and getting worse each day. Today it's the worst and even a little itchy. Until I tested positive a few weeks ago on the Celiacs panel, I had no idea it cold be related.