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reeetz

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  1. Hi Swiegie,

    I have read many things about about European descent having Celiac the most. My boss, who is also from Scotland, printed out this article for me the other day from one of the newspapers in Scotland. It was talking about a women there who is making her own gluten free bread and how she will end up making so much money from her new business. It also goes on to say that they estimate about 15% of people in Europe have celiac disease. It was a very interesting article. He gave it to me a couple weeks ago so maybe you can still look it up. I would let you know the date but I left the article at work.

  2. Everything I have read says that you have to be eating gluten before you do the blood test. What I am wondering though is how long on the gluten free diet for it to come up negative?

    I was on the diet for 6 weeks before I took the blood test. The test came back normal. So..I decided to try my own test by eating gluten and guess what happened? The next day I started feeling horribly sick with fatigue and the stomach cramping. My stomach cramping seems different then if I were to have the stomach flu. A couple days later I was vomiting and had D. It took the whole week being off gluten again to finally clear up. I think that I am finally starting to realize that I don't care about the tests anymore...I know what makes me sick. Maybe give gluten a try and see what happens. It may be the only test you need.

  3. Hi Mandy...

    I just thought that I would put my input in on your situation. I agree with what everyone is saying. You do need to be eating gluten to have the blood test not screwed up. I also think a Colonoscopy is a good idea, but ask to see if you can get an edoscopy at the same time. The first doctor I went to said that he would "check" for Celiac disease during the colonoscopy. Umm...yeah...come to find out that is not possible.

    I went to a new doctor who knew a lot more about Celiac. When asking about the colonoscopy and if it can detect Celiac...they said no. Not at all. They also did the blood test but it was after I was on the diet for 6 weeks and feeling so much better.

    Just some advice, be assertive with your doctor. Let them know what you know and what you want done. It is your health.

  4. Thank you everyone for replying so fast and for the support. Luckily the Zofran is working I think for the nausea and the D has finally come to and end (hopefully). I don't think that there is anything left in me anymore. I still have the stomach pain but it is getting a little better now. I will probably try some Pepto soon to see if that helps.

    Flagbabyds....I completely understand what you mean about school. I am in college full time right now too and working a part time job. Getting sick like this does not make going to class easy. I'm just hoping I will feel better in the morning so I can make it to class.

    Again...thank you everyone for your advice. Nobody around me truly understands what I am talking about so it's nice to have somewhere to go.

  5. Ok...so I made a really stupid decision on Sunday. After getting back negative blood test after being on the diet for 6 weeks, I decided to test myself and see what would happen if I ate gluten. So I did. Now this is what I have been going through the last few days:

    Day I ate gluten: Got really really bloated that night and really tired. Nothing too crazy.

    Day two: Was extremely fatigued, with a headache and tummy ache. Again...nothing too crazy happened. (I also ate some cereal with gluten this morning but then decided to stop the gluten thing because I felt so bad).

    Day three: Felt a little better in the morning and afternoon, then my stomach started cramping again and I got really bloated again.

    Day four: Woke up with the stomach ache still that has persisted throughout the day. It got worse halfway through work. Then I started feeling tingling in my butt and legs and that is never a good sign for me. Then the nausea hit. Horrible nausea. I had to leave work. Took a Zofran on the way home hoping it would calm the nausea down. Made it home just in time to run to the toilet and vomit. Have had awful D the rest of the night, and the stomach pain refuses to go away.

    Question is: how long will this last? Please tell me it will be over soon! I can't handle this anymore. Clearly I know now that gluten is my enemy no matter what some stupid blood test says.

    Has anyone ever had the violent reactions days later though? Any thought and opinions would help since I am pretty much stuck in bed till I'm better.

    Thank you.

  6. So I have been gluten free for 7 weeks after about 2 months of feeling awful. Once gluten free I started to feel great and finally keep food down. I had the blood test last week which came back negative(although I had been on the diet for 6 weeks already).

    I decided to do a little gluten challenge for myself. I had to know if gluten was causing the problem. Yesterday I ate myself I nice big breaded chicken sandwich on a wheat bun. Last night, my stomach got really bloated again and I felt extremely tired. This morning, my stomach is a little better(not great), I feel extremely tired and I have a horrible headache. The headache was not something that I suffered from before.

    I used to get awful nausea and D among other things, but this hasn't happened yet? Is this normal? Can I have a late reaction to gluten? Could the headache be from the gluten?

  7. Hi book-worm. Well, what you described sounds almost exactly like what I have been going through as well. I had the same symptoms after some food poisoning a few months ago, and they just wouldn't go away. I too had a CT scan, ultrasound, even a colonoscopy. I just had the celiac blood test done last week which came back as negative, but I had also been on the diet for almost 6 weeks at the time so who knows.

    The only difference for me is that the diet has made a huge improvement on my health. Huge improvement. I still don't feel completely "normal" but the difference is amazing. When I first started on it though I was still eating dairy and still felt sick more. Since taking dairy out(which is almost harder than the gluten for me)I have felt so much better too. Just try different things as GfinDC has mentioned to see if other things could be the problem. Good luck and keep us posted on how it goes.

  8. Thank you for the response! The only reason why I am thinking of doing the gluten challenge is because I am doubting myself in the diagnosis. If I get sick then I will probably go gluten free again right away. I know I can't stand it again. But I just keep thinking to myself that maybe it was a coincidence that I felt better when I went off gluten.

    I guess I just don't want to have to be on the diet if I don't absolutely HAVE to. If I do...thats fine. But now I feel that there is only one way to find out. Anyone else feel this way?

  9. Hi Everyone! I need some help and advice please!

    I just got a call this morning from the docs office saying that my tests all came back as normal. They did the celiac blood test and a liver function test because I had elevated liver enzymes before.

    Problem is, when doing the test, I had already been on a gluten free diet for almost 6 weeks. When talking to the nurse, she said she thinks that is not enough time for my results to come back normal. Is that true? How long do you have to be on the diet for the results to come out normal even if you do have celiac?

    I feel so much better on the diet and it just keeps getting better as the days go on. I am thinking of doing a gluten challenge to see what happens. Any suggestions and advice would be greatly appreciated. It makes me so sad that I just don't know what's wrong with me. Please help!

  10. I finally found a great doctor! I am just 5 weeks too late though. I started the gluten free diet 5 weeks ago and feel sooo much better now. I went to see a new doctor today...who was great. Since I hadn't had the Celiac blood panel before, she wanted me tested for it. She of course did mention that because of the diet, the results could come back normal even if they really aren't. So my question....has anyone out there been on the diet for a few weeks but still tested positive? I am just wondering what the chances of the test coming back positive are with the gluten-free diet already started?

    I am just glad that this doctor was willing to listen and not tell me, "there is no treatment for Celiac Disease no it's not that."

  11. Hi! I have a little problem here. I was really sick for a few months after food poisoning and had a lot of testing done, all which came out negative. None of these tests were for Celiac though. I hated the doctor I saw so I made an appointment to go see a new doctor. The problem is that I have already started the gluten free diet and I feel much much better now. So....what I'm wondering is what do you think the doctor will say? I know the tests won't come out right because of the diet now, but I didn't know what else to do. Will the doctor want me to start eating gluten again? Can I just have a gene test done to confirm Celiac? Any advice would be appreciated from anyone who knows something about this. I just want to be prepared when I go.

  12. Tammy, I am having the same problem right now! I was also told that I would be tested for Celiac (through a colonoscopy) which came back negative. Although I should have been having my small intestine tested! Of course it came back negative! The doctor didn't even run the blood panel to test, he just said that he thinks my symptoms are too severe and that there is no treatment for Celiac so it's not that. Going on a gluten free diet is the ONLY thing that has helped me. I feel about 90% better now and have been on the diet for 4 weeks. Still have some bad days though. I am going to see another doctor next week to see what she says though. But if the diet works, the diet works. Don't make yourself sick because doctors don't always know everything.

  13. Thank you so much for posting this. Like so many others that have posted, I am going through the same thing right now just beginning this diet. Although it is helping tremendously, I still have those days that are awful. This was perfect timing for this post because I had an episode a couple days ago and still haven't felt completely great since. This is really encouraging for me to know that other people are going through the same thing. Thank you!

  14. I am right there with ya! I have only been on the diet for about 3 weeks now. I finally started feeling good. Better than I had in a long time and I felt good for about a week. The I woke up yesterday and my head was pounding! I could totally feel a cold coming on. Then I went to work and made an even more stupid decision. I decided to try to eat out for the first time in weeks. I went to Mad Greens and got a salad with "gluten free" dressing. A few hours later I felt bloated, nauseas, and then later had the diarrhea. Could I have gotten sick from a salad? It is the only thing I ate besides breakfast which I know was gluten free. So...on top of my cold, I feel sick in my stomach again. When will this stop?

  15. Hi Everyone! I want to know if anyone on here has a good GI doc they go to or have heard about around the Denver/Boulder area. I have already seen one...which I could not stand, and have an appointment with another on the 25th. I don't know if she is any good though so I was wondering if anyone had any recommendations they could give me. Thanks for any help!

  16. I was just wondering how long it takes to feel normal again. Since starting the gluten free diet (2 weeks ago), my symptoms have improved greatly. But I still don't feel "normal". Some days will be fine but I still have those bad days where I just don't feel right. Did this happen to a lot of people? Am I doing something wrong?

  17. The doctor I went to took the biopsy during the Colonoscopy also saying it was for microscopic colotis and celiac. They came back negative. But in the paper I received with the results it mentioned negative for celiac under the Endoscopy section which I know he did not do. And everything I have read said that an Endoscopy was the way to diagnose it anyways. I wish he would have just done the blood tests when I mentioned it because I was still eating gluten at that time.

    He didn't even listen to my symptoms at all and said that my symptoms sounds too severe to be Celiac. Has anyone else heard that? Other people I have talked to had horrible symptoms like mine. Pale diarrhea, nausea, bloating, gas, tingling in my legs....

    I am interested to hear what the other doctor I see will say, but that is not until the end of next month!

  18. Aura, thank you for posting your old thread you had on here. It does sound exactly like what I am dealing with right now too. I have not been eating many veggies and I just started to cut out dairy as well. I just can't stand not eating dairy! I have done the prune juice thing a couple times but I just don't like it. My main concern is making sure I'm doing this diet right.

    It really is amazing how my symptoms have improved so much in just 2 weeks. I have no more diarrhea, no more nausea (which was awful), no more bloating (for the most part). I'm just hoping that it is not just a coincedence and I am still really sick.

    As for the doctor, yeah, that guy was a complete moron. He just didn't want to hear anything about celiac but said he would test for it during the colonoscopy. He did a biopsy but I was pretty sure it had to be of the small intestine. I should have argued but he was the doctor....what did I know? I regret that now.

  19. Thank you so much for the replies. Sandsurfgirl, I completely agree with you about eating the gluten again. I have read that the tests may not come back completely right, but I just couldn't take being sick anymore. It was something that I was willing to try because nothing else was working. Well...this seems to be the one thing that has worked for me. I have felt better than I have in 2 months.

    As for the doctor, I hated that guy and will not go to see him again. He also performed a colonoscopy saying that he was checking for Celiac, but as far as I have heard a colonoscopy can't diagnose this. Has anyone heard anything different? I am going to see a different doctor though that hopefully will have a brain cell and can help.

    I have never been good at eating fruits and veggies but I will try to eat more for the constipation. As for eating gluten again, I don't think I can do that yet. I don't want to end up in the hospital again. Thank you again for the help.

  20. Hi everyone! I am new here and newly on a gluten free diet. I have not yet been diagnosed but will be seeing another doctor in the next few weeks. I have been having Celiac symptoms for a couple months after I got food poisoning. I mean horrible symptoms too! I have seen a GI doctor but he was of no help and just blew me off when I brought up Celiac saying there was not a treatment for it.

    After the medicine he gave me did not help, I decided to try a gluten free diet. I have been doing the diet for about 2 weeks now and have seen a big improvement with many of my symptoms.

    The question I have is this....since being gluten free, I now find myself somewhat constipated when before it was all diarrhea. Could it be all the foods that have rice? Is this normal? Have other people experienced anything like this? Do I need more fiber? Any information will be helpful since I am new at all of this.

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