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So Scared And Sad

tammy

By tammy
in Coping with Celiac Disease

Recommended Posts

tammy Community Regular
tammy
Posted

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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Grissomz Newbie
Grissomz
Posted

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

Canadian Karen Community Regular
Canadian Karen
Posted

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

WLJOHNSON Newbie
WLJOHNSON
Posted

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

tammy Community Regular
tammy
Posted
  • Author
HUGS FOR EVERYONE!!
DrLeonard Newbie
DrLeonard
Posted

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.

plantime Contributor
plantime
Posted

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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cdford Contributor
cdford
Posted

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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      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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    • NanceK
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      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
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