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So Scared And Sad
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8 posts in this topic

I simply thought that perhaps I could get some sound support. I am soooooooooo saddened by the complexity of my disorders and the thought of going to a doctor that doesn't take our insurance is astounding.

I have finally been able to get my headaches significantly reduced within this month and my anxiety is also significantly reduced for several months but now I have a new symptom, low blood pressure. I am pretty certain of its cause but which, when, how and what doctor and medication to try is overwhelming. I want to be on top of this once and for all. Finally and now..... I feel like I can shout>>>>>>>>>>>

I have preferred integrating both traditional and complimentary medicine approaches for about fifteen years but it hasn't worked out like the doctor thought and I had hoped. I am one of those people that if it isn't going to happen it will!!! Realistically, I look fairly good for having a chronic, multiple metabolic disorder but how much can any one, average person stand.

Can you relate and what hope is there, another medicine, another test,

OH, Bother!

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I have low blood pressure also, although it is much better now. I learnt to stay away from garlic, and cruciferous vegetables(cabbage, brocoli, bruss. sprouts, cauliflower) and espeacially fish oil. The headaches went away when I watched what I ate, and started to take a high quality food enzyme, to help digest my food. What did you try so far? Are you diagnosed as Celiac? If so, keep at your diet, and give it time..

Good luck

Grissomz

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I also have had low blood pressure for as long as I can remember.... I have just learned to live with it. I just figure it is all part of the whole picture (celiac disease, collagenous colitis, anemia, hypothyroidism, etc. etc....) I also find that I have palpitations quite often, and "skipped beats".... I figured this also was part of low blood pressure..... I also kinda suspect mitral valve prolapse, but I am going to check into that when I see my specialist in January.....

Have a great day!

Karen

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Hi,

Maybe those of us with Celiac all have multiple metabolic problems, because from reading the posts ahead of this one, it sure sounds familiar to me: low blood pressure, headaches, etc. I have asthma, a spastic colon, low blood pressure, a heart murmur, and in the past I had an ulcer.

Since sticking with the no grains, no milk or dairy, no egg whites, yeast, modified food starch, etc. diet I have been feeling better, but I still tire easily, and have to be so diligent about reading labels, and about what I eat.

I am so happy that this board is here for all of us when we need to commisserate with each other, and I, too, know what it is to feel sad, frustrated, lonely, isolated, and unwell. So, I am choosing to do very little this holiday season, other than brief visits with my closest family members (along with work).

I wish you all much renewed health, happiness, and feeling better. Welda

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I'm so sorry for what you're going through. I think I can relate to the frustration, as I'm sure a lot of other folks here can, too. I first posted to this website (after four years post-diagnosis) last week because I picked up a new disease---and it makes me furious sometimes. It helped just to read what others have gone through...maybe you can find some comfort in knowing that you're not alone. I do hope you feel better soon.

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My neice and I have both had low blood pressure all of our lives. we have had no problems from it, other than getting cold easily. I have had my heart and circulation checked, and both are wonderful. I just don't limit salt, and drink plenty of water.

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Yeah, I'm not alone! My blood pressure is so low that nurses often take it two or three times because they think they have made an error. If I wind up at the hospital, they hold me until they can get it up to a certain point before they let me go home. The good news is that we don't have to worry about some of the issues associated with high blood pressure. (How's that for finding a silver lining?)

I look back and can see that for years the misc problems added up. The doctors were stumped because there were so many apparently unrelated problems. When the celiac finally came into the picture, they all sort of went "Duh!" because at last we had something that explained the problems with so many different systems.

While I became permanently disabled from the fibromyalgia, neuropathy, etc..., they have all gotten somewhat better since going gluten-free. When all of them get a little better, the big picture gets a lot better. I know that life will never be as it was, but I'll take every little bit of improvement I can get. The gluten-free diet has done that.

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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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