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So Confused
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4 posts in this topic

I was recently found to have Celiac Sprue. When I went back after my endoscopy (6 weeks after it) the Dr. told me that is what the biopsy showed. I have IBS also and knew what a gluten-free diet was all about. I had a blood test and the numbers were in the normal range. Through his nurse I was told to keep eating like I have been. I really want to start gluten-free, but it is hard because I am on disability and live in a rest home and unless I have a Drs. order I am sort of 'up the creek'. I will see my GP this week and see what he says, but I am really nervous. I understand the part about any gluten can cause a reaction, but is the reaction as severe with a little as it is with alot? I called the Medicaid office and they said that the home does NOT have to provide me with a special diet. (can you belive that?????)

Carol

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If you were diagnosed through a positive biopsy then you need to start a gluten free diet right away. Gluten in any amount is bad. There is no levels of celiac but there are levels of symptoms. Some people get bad reactions with small amounts and some people get no symptoms with it whatsoever...in either case any amount needs to be avoided. A little bit of gluten in the diet is equal to not following it and damage will still be done..symptoms or not.

I am sure something will work out for you. Hang in there. :D

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So why did they tell you to keep eating gluten? Are there more tests to do? Maybe they just want your GP to tell you what to do.

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I don't know .... The GI is the one that told me that I had it, but at that time I hadn't been to this site and didn't know how serious it was or would have pressured him. Maybe he is waiting for my next visit, but that isn't until Oct. Well, my GP will be here tomorrow and I will see if he can get me some answers. If not I will have to switch GI's.

:angry:

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    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
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