Doctors keep going in circles..... im so lost and confused

My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...

Im trying to figure out why i have decreased folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to me..

would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?

iv been told i celiac and then iv been told i dont then i do then now its a were not sure.

28 Replies

  • Are you lactose intolerant?

  • The test came back negative. I can't even have lactose free

  • If the test was negative, then that would be okay to eat lactose in the food, usually. Call your doctor and ask for another appointment. Please let us know what happens.

  • Oh trust me I'm still dealing with doctors they don't know why I can't have it I can't even handle lactose free dairy makes me sick

  • When is your next appointment?

  • She did not make me another one yet she is going to call around to the other doctors and then call me next week

  • Let us know what you find out from the doctors next week.

  • Will do. Iv been trying to figure it out now since march.... they think I have celiac but arnt sure and then they have no clue why Dairy and fructose are a issue.. will let u know next week..... Iv been told so much stuff from them I just want a diagnosis... don't care that I can't have it all I just want a reason why lol

  • Okay. Keep in touch anytime!

  • Still waiting for doctor to call

  • When did you call them? What are their hours for seeing and making appointments with the patients?

  • I went in the office Thursday i had a appt. Friday they are closed so I'll give them tomorrow and wed then call Thursday of I don't get a email or phone call. Doctor said she's going to do both.. I just want the why fructose is a no for me when the breath test was negative.. but made me so sick.

    And also want to know why on the endoscopy it's showed decreased folds. What ever that means..... said was suspicious for celiac.... but then again I have not ate gluten for 6 yrs so would the vili heal and not the folds?

    Just wait some more .

  • Not sure about the vili folds, but if you haven't eaten any gluten in 6+ years, then it could be something to look into as something healing on its own.

  • Ok so don't have answers but gi doctor finally got back to me. Since iv been gf for 6yrs then it's hard to say if I have it or not but with the decreased folds she said more than likely I do and my vili have healed so because I feel better on gf then naturally is to stay gf.. no adding it back unless I want a true diagnosis but she said she thinks I have it......

    For the other stuff she wants to do more tests to see if it's my pancrease.

  • Why the pancreas? Does she think you're diabetic?

  • I have no idea

  • Have you ever been tested for diabetes?

  • No i have never been tested for diabetes. they think by gi issue is caused from my pancrease so they have to do blood work and stool samples. i never heard of pancreas being a issue of gi problems... i have my blood drawn all the time at rhematologist and alot of it there is no red flags. but then i have some numbers that are border line normal for high or low. and i also have some numbers that are high and low. im lost on everything

  • If you Google Exocrine Pancreatic Insufficiency it makes some since why they think it might be my pancrease. Maybe it's that and all I need is another medication and then I can eat food. But gluten

  • Oh! Will check it out.

  • Have you heard of Zenpep? It's used for digesting food. Check it out with your doctor.

  • I'll mention it to my doctors. I need something it's only getting worse. At first it was just dairy gave me stomach pain and diarrhea. Then few weeks later with the dietitian that fructose was an issue also and all it did was give me diarrhea and stomach pain. Now when I eat them I vomit... some other foods are now causing diarrhea but can't pen point what.... I'm just so over this.. Thursday night and last night I just went off deep end and ate some candy I knew I should not have. But it wanted me 2 eat it... was sick after and am still feeling it today. But I figured if nothing is wrong maybe I just need to get my body 2 like it

  • I'm going to PM you in a few minutes. Check your HU messages section.

  • Ok.i will try

  • Just sent the note right now.

  • Hi

    I'm sorry you've been so poorly and the doctors haven't been able to help.

    My experience is that I can't tolerate either lactose in dairy or the casein either. I gathered a while back from the Canadian coeliac sprue society that casein intolerance is really common with gluten problems and they used to warn sufferers about it on their website. However I'm not sure how much info there is on the website now. The other thing is that I react really badly to glucose fructose syrup because much of it is derived from wheat I believe. I have to avoid it completely and incidentally eggs too. The other thing I have had problems with is the 20ppm gluten limit on European gluten free foods. My body needs something closer to 3-5ppm, the Australian and New Zealand limit. I have to import my flour as the gluten contamination is too much for me at what is acceptably 'gluten free' in Europe. And there is a contamination problem in foods which should be gluten free but I detect small amounts of gluten and get ill.

    So for you....maybe try just fresh foods to settle your tummy for a bit. Have a look at Queensland uni, Australia gluten research and the New England journal of Medicine which has published some gluten articles which discuss some of the fringe problems with other foods.

    The other thing to read is the book called GUT by Guilla Enders which writes about gut research in a very funny readable way....something in it may ring true and help you. It's in most bookshops and on Amazon.

    Unfortunately a lot of doctors are not up to speed with the research and don't know how to help. When I called coeliac uk when I was first diagnosed they said they couldn't help me because of my problems with milk and eggs too. It was only reading coeliac advice from other countries which acknowledge how common this is, that helped me get my health back. It is a long road to recovery but amazing when you feel better. Good luck with everything. I think when the doctors don't know what to expect or look for they test for the right things, so say nothing is wrong but they are looking in the wrong place. Hope you feel better soon.☺

  • If you are having problems with gluten, fructose and lactose you may need to try a low FODMAPS diet, which eliminates or cuts down on all these foods. Perhaps ask your doctor about this. This link has the basic outline.

    It may not be possible to know exactly why your body cannot cope with these foods, an elimination diet may be the only way to work out what you can or can't eat. Hope you can sort this out soon.

  • I have to say that it all seems a muddle and you so neesto no but maybe the g/f diet has cured you but i would be worried about stopping it guess you need to find out your own answers by the way you feel and elimate foods as usual and then you will live to how you feel im a trained nurse but my ceoliacs is still a challenge and mystery at times too

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