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Celiac and now Type 2 Diabetic


lauramac

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lauramac Newbie

I was diagnosed with Celiac October of 2015.   I was very unhappy when I received the initial diagnosis and spent a few months angry and frustrated as I adjusted to a gluten-free diet.   I  managed to change my diet and my attitude as I slowly became thankful that I had a disease that could be treated by just avoiding gluten.

Fast forward to this week, I was diagnosed with Diabetes* (they think it's Type 2, but we're still testing to see if it's Type 1 or Type 2 or a hybrid) and I feel like I'm right back where I was when I first received my Celiac diagnosis in 2015, but worse, because now there's a whole universe of foods I have to be careful with (in addition to having to take medication with gross side effects, change my physical activity, and test my blood glucose levels). Many of the gluten-free substitutes I relied upon are now unacceptable (because of their high carb content) and items that used to be completely safe (fruit, vegetables) now have to be monitored and recorded. 

I'm frustrated and sad and feel like I'm back at square one. 

My initial internet searches for Celiac Diabetics haven't turned up much in terms of community. When I was first diagnosed with Celiac, these message boards were really helpful.  I'm hoping to find other people who have the co-diagnoses and to learn how they coped and what recipes and products they rely on.   

*I received an initial Diabetes Type 2 diagnosis (based off one in-range A1C, which is not the standard for diagnosis, but the doctor had erred on the side of an early diagnosis to get me into the diabetes management classes) when I was diagnosed Celiac, but my A1Cs went back into normal range once I went on a gluten-free diet, so the diagnosis was rescinded (with the thinking that the insulin resistance was attributed to the cortisol and adrenaline of a gluten-eating Celiac). 


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Jmg Mentor

I'm not diabetic, although before going gluten free I thought I was and had several negative tests. Gluten definitely screwed up my body's capacity to manage blood sugar. There are several diabetics on the forum however and whilst I'm sure they will answer your thread as soon as they can it would be worth searching the site for some of the past topics as it's come up very frequently.

Some good news which may or may not apply to you broke just this week here in the UK with this study published in the Lancet Open Original Shared Link

You may have caught some of the news coverage. Open Original Shared Link

It's not a cure for everyone, but the results were really promising. 

Best of luck :)

 

 

lauramac Newbie

I will check out those links.  Thank you for posting!

Ennis-TX Grand Master

Due to me being unable to have carbs due to antoher AI complication and cooking for my diabetic parents, I came up with a whole bunch of low carb/keto recipes including rolls, cakes, breads etc. https://www.celiac.com/gluten-free/blogs/blog/1202-gluten-free-and-specialty-diet-recipes/

 

If you need help finding anything else I know companies that sell baked goods, cereal, breads etc that are safe for most diabetics and do not spike blood sugar levels.

cyclinglady Grand Master

I am sorry that you are struggling with the thought of two restrictive diets.  I get it.  

A year after my diagnosis, my glucose labs results indicated that I was prediabetic.  The note attached to my results from my GO told me to exercise more and reduce the sugar in my diet.  What?  I have always been in shape and exercise more than most people my age!  Give up more food!  No way!  But I have seen the damage Type 2 (TD2) can do to family members and I knew that having celiac disease and Hashimoto’s, that I was at risk for Type 1 (TD1) diabetes.  So, I researched.  I found a site that encouraged me to get a cheap meter from Walmart ($40 with testing strips) and start testing 1 and 2 hours after meals.  My results were shocking!  The meter did not lie!  I charted my data for a month.  Then I adjusted my diet by reducing my carb intake and adding more fats.  I continued to test.  The results were amazing and confirmed that I had an issue with carbs.  

I went back to my GP and he was impressed.  There was no doubt that I had diabetes.  We talked about further testing, especially since I was concerned about being a TD1. But I had a wacky celiac antibodies result, and I knew the TD1 in adults can take a long time to develop, so my doctor and I opted to monitor myself since the treatment at the time was the same.  My goal was to avoid all diabetic meds (due to my damaged gut) and prevent it from progressing.  My doctor was not exactly on board with the diet as at the time it went against the ADA, but he told me to keep it up.  Later, the ADA added this diet after the University of Alabama research paper and others were published.  

My HA1c for the first time in four years was normal just this past week.  I was happy to have it under 6 in the prediabetic range, but worked at having normal blood sugar results.   It took a few years, but I did it!  There is a lot of denial, but my meter does not lie!  

So, now, My doctor and I think I am a TD2, managed with a low carb high fat diet.  The diabetic drugs can mess with your gut.  Even the common and “safer” Metformin can cause gut issues.  I already have gut issues as a celiac!  Some newer drugs cause gastroparasis.  Who needs that?  So weigh the risks and benefits of the drugs carefully.  

I orginally thought my diabetes was due to my celiac disease.  Heal the celiac disease and my diabetes would go away.  But that did not pan out.  

My goal is to keep my feet, eyes and kidneys.  I have already learned to adapt to both diets and it is not hard once you get used to it.  I am worried about TD2 statistics.  Diabetes contributes more to health damage than heart disease and cancer, yet few are freaking out about it.  They just think fat people get it, but that is not true.  Look at me thin and in shape!  It really is our Standard American Diet.    I am now not talking just to you but to all members reading the thread.  Diabetes is most likely is going to happen to you!  

Finally, how can I resist?  I read and follow people, lectures, etc. to get the support I need.  I would recommend Blood Sugar 101 manned by not a doctor, but a person who is trained to look at Research symptoms studies.  She sells a little book, but it is the same information as her website.  I bought the book for my Uncle who is not on the internet.  There are a lot of recipes on the internet too.  

That new starvation diet?  That was the original treatment for TD1 diabetes.  Why starve?  The low carb high fat diet might just as well work better for you.  I have found that like the gluten free diet, there is no “one size fits all”.  We are all unqique and you will have to tweak things to accommodate your needs — dang...I still can not eat garlic and onions.....ugh!  

So, you can overcome this!  You can do it!  And you will feel better too!  

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    • daniellelawson2011
      Thank you for the welcome and reply. The first test was tissue transglutaminase IGA and it was normal. The second test just simply says IGA and it was 638. You definitely answered my question, it sounds like im negative for celiac since the 1st test was normal, and that another condition has caused the abnormal result of the IGA. That's exactly what I was wondering. Im almost positive I have MS and I've read results are higher like that with early onset. Or it could be IBS. Hopefully the visit with the neurologist will give me even more answers and point to a final diagnosis. I really appreciate you taking the time to reply and for helping. Thank you so much!
    • trents
      Welcome to the forum, @daniellelawson2011! First, we need to deal with terminology here. When you refer to the "ttg" test I take that to mean the ttg-iga. And when you refer to the "iga" test I take that to mean total iga since the magnitude of the score would suggest that. Total iga is not a test for celiac disease per se. It is run in order to check for iga deficiency. If you are iga deficient, then the ttg-iga and other iga tests that are specific for celiac disease will be abnormally low and this would potentially produce false negatives. You are not iga deficient but, rather, your total iga is abnormally high. This can suggest underlying health conditions, some of them can be serious in nature.  https://labs.selfdecode.com/blog/high-iga/ "High IgA usually points to chronic infections or inflammation, though many disorders can raise its levels. High IgA does not cause symptoms. People show symptoms from their underlying health problem." One thing I might add and that is you must have been eating normal amounts of gluten for weeks/months prior to the blood draw for antibody testing. Testing while on a gluten free or gluten reduced diet will not yield valid results. Also, here is a primer outlining the various antibody tests that can be ordered to check for celiac disease:  
    • daniellelawson2011
      After struggling with many different symptoms for years with no diagnosis, I decided to do my own research and I stumbled upon an article about celiac disease. I asked my PCP to order a ttg and iga. The results: the iga was high at 638. The ttg was negative. Of course I will discuss with my doctor, but i would like to hear from people that have went through the process of diagnosis to maybe give me some insight on what this means and where to go from here. Also of note, i had a brain mri which showed white lesions which arent typical at 44 years old. I have many MS symptoms. I go to the neurologist on Tuesday, but just curious if anyone knows if there is a correlation between iga and MS. I appreciate any help! Thanks!
    • Joe R
      Thank you for your advice. I appreciate the help. 
    • nanny marley
      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which if not on the diet I would have to avoid anyways has I don't tolerate many fruit juices so I'm sure I've done the right thing I did try to contact the department on my letter but weirdly enough it was ringing but then after a while saying wrong number 🤷 but again I'm positive I've done the right thing I'm going to take today very lightly too with low portions and more liquids so yes thankyou for that advise I am very nervous but I have had time to think and read other peoples experiences and not all are bad there is some good advise and reassuring information from people who do these all the time so I'm trying my best to be positive so I can at least settle my mind knowing im doing this to help my own health has this year has been a rollercoaster for me cutting out gluten and lactose was a good idea but I still get flare ups and other symptoms so it definitely is worth a check like you said it was the calprotein that prompted the doctor to refer me again thankyou for your reply it's means a lot for someone to take the time to listen and respond and give uplifting advise  especially to me just now has I'm a bundle of nerves inside getting closer to tomorrow prep so thankyou for that 🙏
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