Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Scared And Sad


tammy

Recommended Posts

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.