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So Scared And Sad


tammy

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tammy Community Regular

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

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

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

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
HUGS FOR EVERYONE!!
DrLeonard Newbie

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

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

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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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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