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New To The Gluten Free World
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Hi everyone.  This is my first time posting although I've been reading some of your posts for a week or so now.  I have a few questions that I hope you can all help me with. 

 

A little catch up on where I've been and where I am currently.  I was diagnosed with hypo thyroid 10 years ago and have been on Synthroid since then. At that point I was getting horrible back pain, tired all the time, and just plain didn't feel well.  Since then some symptoms have stabilized and some have just gotten worse.  For the last 10 years and probably well before then, new issues just keep popping up.  Just a list of symptoms I have had on going and unexplained are chronic diarrhea, stomach pain, constipation, bloating, gas that just seems to not go away, pain in my lower back, random hot flashes, anxiety, dizziness, fatigue, crying for no reason, and other minor symptoms.  I have had days where I would have to run to the bathroom 5 or 6 times a day.  After I would feel so exhausted and hungry to the point that I just can't seem to get full.  This would be followed by about a week of constipation, bloating, gas etc.  I have had stomach, liver and gallbladder ultra sounds come back normal. I have taken multiple thyroid tests that came back normal.  About 2 years ago I started having short periods that would last about 2 days and then I would get multiple in a month.  Usually about every 2 weeks.  I've had ultrasounds for that come back normal.  I've been told its hormones, depression, all in my head.  At one point I was in my Drs office in tears because nothing was making sense.  I've also been diagnosed with high levels of fatty enzymes in my liver.  I am only 30 years old, I exercise, eat very healthy.  I rarely have sugars and eat mostly whole foods.  So you can see where all my frustration is.  Recently my sister suggested something called the FODS food list for IBS, I did that for about a week and noticed that my symptoms flared up when I ate bread.  So I cut it out for about a week and I started feeling better. 

 

Anyway, I had my blood tests for celiac this morning and have an appointment with the GI next week.  I know I am supposed to continue eating gluten until testing is completed.  I was only off for about 5 days and since then have been eating it just not every day.  I noticed when I do eat it I have horrible stomach pains, I bloat up with in 30 minutes, I get really tired and heavy and this lasts about 3 or 4 days.  My question is do you think being off of the gluten off and on a couple days here and there would make much of a difference?  And is it normal to get such a horrible reaction to it only a few days being off?  My doctor had said I didn't have to be on it for the blood tests but everything I read says the exact opposite. 

 

I'm really hoping that this could be the answer. I'm at my wits end and at this point just don't want to eat for the fear of getting sick.  Have any of you had similar experiences or have any advise on how to get through all this?  Thanks all!

 

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I am sorry that you are feeling unwell!

Here is a link to the University of Chicago's celiac website. Share the test requirements with your doctor:

http://www.cureceliacdisease.org/medical-professionals/guide/factsheets

Keep eating gluten until all testing is complete! It is hard, but it can be done! You can do it! just take one day at a time.

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    • 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!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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