Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

(Barely) Living With Celiac and T1 Diabetes


Mary Kate

Recommended Posts

Mary Kate Newbie

Let me introduce myself. You can call me MK. I was diagnosed with Type 1 Diabetes about 6 years ago. I found the complete life change to be a major challenge, as would anyone. I admit, I never really fully was able to, leading to many health issues and many stays in the hospital with diabetic ketoacidosis. Then, to make matters even worse, about a year and a half ago, I was tested and it was confirmed that I have Celiac’s Disease. I have yet to eliminate gluten from my diet. I have made many attempts to do it, but I fall off the band wagon every time.

Now to top things off. I lost my job over the summer and found myself living out of my car. I managed to find a part time job, but that barely pays for the car itself. I have to buy food on the fly, since there is nowhere to store food and nowhere to even cook it. This, as you can imagine, limits my options to the point where I don’t even know what to do. I eat anything I can, whenever it is possible. If I eat over another person’s house, I take what I can get. It is wreaking havoc on my intestines and my digestive tract. It has become a nightmare.

Recently, my mother has been letting me stay on her couch, which opens up some possibilities for me to finally start getting myself straight. Although she buys a lot of bread and gluten full products, I have been talking to her about trying to work with me and buy some better options for me. That can get expensive and neither she nor I can truly afford to do it. Everything I have seen for sale that is gluten free, such as bread, pasta, etc., is way out of our very limited budget. I need to fix this, though. I need to get healthy or I am afraid I will die. Not even exaggerating.

I need some support and didn’t know where else to look. I found this place and was hoping I could maybe find some help and advice. Or even just an ear (or a set of eyes?) to turn to.

Thanks in advance.

MK


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi MK,

Welcome to the group! :)  It sounds like you are ready to make some changes to improve your situation.  That's a good thing!  I think sometimes people new to the gluten-free diet think it is a pretty tough thing to do.  But it really is (or can be), a very healthy and satisfying diet.  And it a diet you can get used to just like you got used to your current diet.  Sure you'll have to make changes in your food choices, but they are changes that will end up in you feeling better physically and maybe mentally.

Spending lots of money on special gluten-free foods isn't necessary and is not even a good idea for beginners.  You can live just fine without gluten-free cookies, bread, candies and other such stuff.  Instead concentrate on eating meats, veggies, nuts, and some fruits.  A whole foods diet is a great way to start gluten-free, and making most if not all your food from scratch at home ensures that you know what is in it.  Save all that money from not buying gluten-free specialty foods and use it for whole foods instead.

The immune reaction in celiac disease is not something that stops overnight.  The reaction can last for weeks or more in some people.  So it really does matter if you cheat with a little gluteney something now and then, because the reaction (damage) doesn't stop in a day.

I don't know if you are aware that people with celiac disease have a higher chance of getting/having other auto-immune diseases.  T-1 diabetes is one of those other conditions.  Just for a point of interest.

But do hang around and ask questions.  After you have been gluten-free for a while it becomes the normal diet for you, and you may stop missing the other foods then.  You may even start wondering how people can eat that stuff! :)

 

LookingforAnswers15 Enthusiast

Hi MK, sorry tho hear that you are going through this and facing these challenges. It is true that gluten free food can be very expensive and truth be told, it is not even that healthy to eat all that processed food. There are not that many gluten free products available where I live and the ones that I can find, including pasta, bread, etc. are super expensive.

To make sure I get some carbohydrates and filling food, I eat rice instead of bread. Rice is a great substitute and it is much cheaper.  I still have not learned to bake my own bread =(.

Eating meat and veggies with rice is good for you and filling and you do not have to worry about gluten. However, avoid night-shades for now (tomatoes, peppers, eggplant) since you might react to them until you recover (not necessary) and pay attention to dairy products (celiacs might not be able to tolerate milk, cheese, etc at first). I am glad that you are living with your mom now. This means that you can make a bit more food and have left-overs. Soups are good for you and they do not have to be expensive. I make a pot of soup so I have it for 2-3 days.

As much as it sucks that we have to worry about these things, at least we know what to avoid and you get used to it with time so it becomes easier. It can be difficult to adjust but you will do it.  I never cheated after I was diagnosed because I was hospitalized prior to my diagnosis and I was worried of going back to the hospital. However, I am sure that I unknowingly ate things that could have been cross-contaminated and things I react to but I did not know at that time (eggs, nightshades, dairy, etc). Also, consider possible sources of hidden gluten (e.g. sauces).

Pay a very close attention to cross-contamination. I understand that you are in a difficult situation but if possible, please do not eat at other people's houses unless they are aware of your celiac disease and at least try their best to avoid cross-contamination. The more we get glutened, the more time we need to recover, which affects our overall health (both physical and mental health), ability to work, our energy, and we put our body in danger of getting other autoimmune diseases.  Once you start feeling better, you will feel much better and able to find a full time job. I am confident that you will figure it out. I wish you good luck and all the best.

lmj623 Apprentice

Wrong post!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

    2. - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

    3. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    4. - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    5. - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,059
    • Most Online (within 30 mins)
      7,748

    Jessica A
    Newest Member
    Jessica A
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...