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End Of My Rope

3 posts in this topic

I have been sick for over 4 years now, and im a 21 year old college senior. I have had about 5 or so different gastroenterologists, had 3 upper endoscopies, a colonoscopy, and multiple other upper and lower GI series tests. My blood tests came back positive for the IgG and IgA antibody titors- which most doctors say is alone enough to diagnose something who has all the symptoms.

I had my first upper endoscopy and it came back negative- the Dr. said he didn't see anything wrong. The second one had the same result. The third endoscopy and third Dr. said that it didn't look like celiac disease but that my duodenum was "pale" which is indicative of malabsorption. Celiac disease causes malabsorption of the small intestine- and I don't understand how with all of my symptoms, a positive blood test, and malabsorption of my small intestine that I could still not be diagnosed with celiac disease!! I was so infuriated. I went on a gluten-free diet for a while and felt better. But after about 5 months it got too hard to handle and since I haven't officially been diagnosed with celiac disease, I didn't think it was really necessary.

I am a college senior who does not like to cook and am pre-med with an extreemly busy schedule. Since I spend most of my time in hospitals as an EMT and with pre-med internships, I just don't feel like going back to insensitive doctors who will not do anything for me. But now my symptoms are getting a lot worse again, and there is still blood in my stool. I tried to give blood a couple of weeks ago and my hematocrit was too low- the nurse there told me that I was mildly anemic. I don't know what else to do and am very much so at the end of my rapidly fraying rope!! I am considering going back to another GI Dr. but I would like to find one who is sympathetic and who specializes in celiac disease. I live in NJ but go to school in PA and would be willing to go to one in either state. Does anyone have any reccommendations or advice that can help me out?? I would really appreciate it!


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Just my opinion, but you had two positive bloods tests, one biopsy that was at least somewhat suspicious, improved on the gluten-free diet and then got worse when you started eating gluten again, have unexplained anemia, have diarrhea every time you eat gluten, and have now been sick for five years. I know it's not easy on a busy schedule, but it sounds like you need to be gluten-free. You'll never get through pre-med much less med school like this.



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You sound a lot like me when I was your age. You are going to have to go gluten-free now or you will never make it. It won't be easy to alter your lifestyle but you have no other option. You have tried the gluten-free diet and did feel better so that is a pretty obvious indication of what is wrong. I had never even heard of celiac until I was 36 and by then I had missed out on and lost so much because of it. Take control of this disease now or you will regret it later.



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    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
    • Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front. -Basic metabolic panel -Liver enzyme panel -CBC -Serum IgA -Tissue transglutaminase(tTG), IgA -Tissue transglutaminase(tTG), IgG -Thyroxine(T4), free direct serum -Thyroid stimulating hormone I thought the same thing about positive antibodies and non-celiac sensitivity reading this; l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition.  
    • I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.  My heart still feels weird too.  Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils. My GI will probably not see me for a week or two, my primary care put me on sucralfate.  As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.  Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August. 
    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
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