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

Sick Of Being Sick

peaceloveandinsulin

Recommended Posts

peaceloveandinsulin Newbie
peaceloveandinsulin
Posted

Hi, my name is Rachel and I was diagnosed with type one juvenile diabetes when I was five... and then when I turned sixteen I was diagnosed with celiac. I'm sure I have always had celiac, but it took them years to diagnose it. Now I am almost 24 years old, and was just diagnosed with autonomic neuropathy and gastroparesis,(both complications of having diabetes for soo long). I'm sure there are other people out there like me... but I have yet to meet them, and very few people seem to understand what my life is like on a daily basis. Noone seems to understand that no matter how hard I try something is continually wrong or I am continually nausious. Everything affects everything else, and I feel like I can no longer look forward to good health, even in my young days. Every time I try eating out (gluten free) I throw up which now I understand could be from the gastroparesis, but even when I am complertly gluten free I am still always bloated, sick, and tired. In turn the gastroparesis (which means my stomach doesnt empty properly and food sits there for long extended periods of time, undigested) caused my blood sugars to sky rocket out of control because I cannot take the proper amount of insulin when food is not digesting at a proper rate. I have no idea who to talk to...Because quite honestly noone seems to quite understand what I am going through. Food is expensive (especially gluten free), and co-pays add up. Co workers are sick of me calling out sick...and I am just plain sick of being sick...is there anything that anyone knows of to help me..(other than the obvious eating gluten free and controlling my blood sugars)...Maybe things will get better when I go back on the insulin pump, but right now I work at a hospital in the MRI dept. and the insulin pump of course is not MRI compatible. Plus I have been written up numerous times for my excessive absences even though for more then half of them I was right downstairs from my dept in the Emergancy Room. I feel like without my health there really isnt all that much that I am able to do...or to look forward to... except being sick all of the time ..and that my health as I get older will probably statistically only get worse...does anyone have any suggestions???

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

Celiac.com Sponsor (A8-M):


miamia Rookie
miamia
Posted
Hi, my name is Rachel and I was diagnosed with type one juvenile diabetes when I was five... and then when I turned sixteen I was diagnosed with celiac. I'm sure I have always had celiac, but it took them years to diagnose it. Now I am almost 24 years old, and was just diagnosed with autonomic neuropathy and gastroparesis,(both complications of having diabetes for soo long). I'm sure there are other people out there like me... but I have yet to meet them, and very few people seem to understand what my life is like on a daily basis. Noone seems to understand that no matter how hard I try something is continually wrong or I am continually nausious. Everything affects everything else, and I feel like I can no longer look forward to good health, even in my young days. Every time I try eating out (gluten free) I throw up which now I understand could be from the gastroparesis, but even when I am complertly gluten free I am still always bloated, sick, and tired. In turn the gastroparesis (which means my stomach doesnt empty properly and food sits there for long extended periods of time, undigested) caused my blood sugars to sky rocket out of control because I cannot take the proper amount of insulin when food is not digesting at a proper rate. I have no idea who to talk to...Because quite honestly noone seems to quite understand what I am going through. Food is expensive (especially gluten free), and co-pays add up. Co workers are sick of me calling out sick...and I am just plain sick of being sick...is there anything that anyone knows of to help me..(other than the obvious eating gluten free and controlling my blood sugars)...Maybe things will get better when I go back on the insulin pump, but right now I work at a hospital in the MRI dept. and the insulin pump of course is not MRI compatible. Plus I have been written up numerous times for my excessive absences even though for more then half of them I was right downstairs from my dept in the Emergancy Room. I feel like without my health there really isnt all that much that I am able to do...or to look forward to... except being sick all of the time ..and that my health as I get older will probably statistically only get worse...does anyone have any suggestions???

alot of what you said rings very true for me too. I cannot swear but I ahve gastoparesis as well and I just started on Reglan and for the first time in four years I have seen some positive results.I would post more but I am exhausted and will try to tomorrow.

MIAMIA

psawyer Proficient
psawyer
Posted

Rachel, welcome to the board.

While I don't have anything specific to share with you regarding your symptoms, you are not alone.

There are a number of members here who have both celiac disease and type I diabetes. I am one of them, but there are numerous others. A couple who come to mind are elye and ~alex~. Look them up in the members page. The three of us are all in Ontario, and communicate frequently.

Uncontrolled celiac plays hell with blood sugar control, because you eat food with carbohydrates, but it is not absorbed. You may have taken insulin based on what you thought would be absorbed, and ended up taking too much. This is a great way to meet the paramedics in your area, and visit various emergency rooms. I have so been there, during the years prior to my celiac diagnosis.

Once your villi heal and your absorption resumes, you will find that you need substantially more insulin, especially the fast acting type.

Balancing the two diets is certainly a challenge. One thing that I will tell you that you must consider absolute is this: WHEN THE TWO DIETS CONFLICT, THE GLUTEN-FREE DIET MUST WIN. A brief variance in your glucose does far less damage than even a little gluten.

I am 53, and was diagnosed with type I diabetes at 31. I was diagnosed with celiac 14 years later.

You will find tremendous support here, and lots of answers. If you have a specific question for me, send me a PM; I can go into more detail about my experience, but will not post it.

Archived

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

Go to topic listing
  • 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
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.