Sick, Skinny, & Nearly Diabetic

UPDATE:  I originally wrote this post in late 2012, after my annual physical.  A year later, in 2013, I knew alot more:  1)  I had confirmed pancreatic insufficiency, for which I now take prescription enzymes with each meal.  2)  I also had confirmed fat atrophy, which had caused basically a large "dent" in my upper thigh, close to my hip on the right side.  It could not only be felt, but also was visible.  Thankfully, it had resolved & my weight had stabilized.  3)  My Hemoglobin A1c was lower at 4.9. 

I will be getting these numbers looked at again soon, so I've been thinking about this old post.  I've also read new information about Hemoglobin A1c being unreliable on it's own.  Chris Kresser feels that fasting blood glucose, A1c, & post meal blood sugars together offer the most accurate picture.  I have the first two measures done annually, but have never tracked post meal with a glucose monitor.  Kresser's article also mentions how A1c can be falsely low if anemia is present & says that 30-40% of his patients are dealing with sub-clinical anemia.  There is no indication that I am anemic & I feel great with seemingly steady blood sugars, however this info. makes me curious.  Perhaps I will try a little n=1 experiment?  What are your thoughts on blood sugar?  Do you track your levels at home as suggested by Kresser?  What are your thoughts on my original post below?  Do you think we miss potential blood sugar problems, because our system does not test for diabetes when a patient has a related condition and/or because we tend think diabetes is only a problem of obesity? 

I'm angry.  I'm angry, because for years my doctors were fooled by skinny.  Here's my true story about being angry and skinny.Diabetes is an epidemic in the U.S. right now.  Over 8% of the population has diabetes.  And the form we hear the most about is Type 2.  You know what we're told . . . obesity puts one at a serious risk for developing Type 2 diabetes.  That's true, but what we don't hear much about is Type 1 diabetes.

Type 1 is autoimmune diabetes, where the body attacks the beta cells of the pancreas.  Guess what?  It is also on the rise.  In 2006 the World Health Organization found that it is rising in the U.S. by about 5% a year.  Type 1 diabetes is strongly linked with Celiac Disease (which is also on the rise).  In fact, some researchers think that the rise in Type 1 is due to gluten ingestion, which we consume much more frequently in modern diets than we ever did before.

About three years ago I started mentioning to my husband that I thought something might be funky with my blood sugar.  Then in the summer of 2011 I saw one of my long time doctors & asked him if some of what I was experiencing (increasingly severe, but undiagnosed Celiac symptoms) might be related to blood sugar problems.  "Absolutely not, you're a thin, healthy young woman."  At the time I did not understand the full scope of diabetes, so I didn't press the issue.

Less than a year later, I was diagnosed with Celiac Disease & soon after learned about the Type 1 diabetes/Celiac connection.  I began asking my doctors in earnest if we shouldn't carefully evaluate my blood sugar regulation.

Former primary care doctor, "No.  Don't worry more.  You worry too much."

Former GI/Celiac specialist, "I only see antibody levels as high as yours in patients who also have diabetes."

Me, "Shouldn't we look at that then?"

Former GI/Celiac specialist, "No.  Not at this time."

Then in the last few months I developed some distressing new problems with my weight.  The fat layer under my skin is changing in spots.  My weight is plateaued, but it is far under ideal & I seem to be totally unable to budge it up even a pound.  Weight loss & malabsorption can be symptoms of Type 1.  I believe my former doctors were fooled by skinny.  While all the public awareness campaigns about Type 2 are so necessary, it has lead all of us, doctors included, into believing that only overweight people develop diabetes.  I think they didn't follow-up with me properly, because they saw a skinny girl.

The reality is that all the inflammation and overactive immune response from Celiac attacked my pancreas too.  Right now my primary care doctor thinks that I may have pancreatic insufficiency, which means I am not producing enough pancreatic enzymes to properly digest my food (particularly fat & protein), but that old pancreas does more than produce digestive enzymes.  (BTW, I am taking enzymes, as well as, apple cider vinegar in an effort to aid my pancreas/digestion.)  It also needs to produce insulin and there are signs that mine may also be struggling in that department.

A good measure of blood sugar regulation is Hemoglobin A1c.  Ideal A1c is 5.3 or less.  My doctor wants it to be 5.5 or less.  Mainstream medicine says it should be 6.0 or less (super not ideal).  Mine is 5.2.  My doctor said to me on Tuesday, "You aren't there yet and you are doing everything you can already."  She's right.  I'm doing everything I can, but my plan is to do it better.

The mainstream medical literature says there is no known way to prevent Type 1 from developing.  I, of course, do not believe that for a second.  I think if you can catch it before you are fully diabetic, just like with Type 2, you have a good chance, with the right diet/lifestyle changes, of beating it.  I'm going to battle autoimmunity like crazy.  I might be sick (but alot less sick than before) and skinny (but not for lack of being well-fed), but I'll be damned if I'm gonna' be diabetic too.

If you are managing multiple autoimmune disorders and working to prevent development of others, DON'T throw in the towel.  Be an autoimmune warrior.  If you are a Type 1 Diabetic, INSIST your doctor test you for Celiac Disease.  If you are a Celiac, INSIST your doctor test you for Type 1 Diabetes.  If you want to know more about ideal blood sugar regulation, check out this series of articles by Chris Kresser.

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5 thoughts on “Sick, Skinny, & Nearly Diabetic

  1. Lisa

    This is exactly what I have been so concerned with too! I have RA and Hashimotos, and my hemoglobin A1c is higher than yours. It's 5.8.
    Can you tell me what questions I should ask my dr? I have an appt with my osteopath next week. Which brand of pancreatic enzymes do you use, and how much ACV per day? Any advice would be greatly appreciated. I am already following AIP, but I probably eat too much fruit. Dietary wise, what else can I do? Thanks so much 🙂

    1. Angie Alt

      Post author

      Lisa, to clarify, I am on pancreatic enzymes due to insufficiency of my pancreas to produce them. That does not mean that my pancreas has a problem producing insulin (diabetic state). When I wrote the original post, my concern was that if my pancreas was struggling in one area, I had a positive Celiac diagnosis, & I had other possible symptoms, then perhaps we should be monitoring for signs of diabetes. I don't talk to often about brand specifics publicly, but if you suspect you are enzyme deficient (digestive problems, weight loss, malabsorption), you can ask your doc about testing your pancreatic sufficiency. At the time I took 1 tbs ACV in 1 tbs water prior to ea. meal, to aid stomach acid. I no longer have to do that. A word of caution, if you suspect stomach ulcers do NOT supplement w/ HCL or ACV. AIP & keeping your fruit intake to approx. 20 g fructose/day (approx. 2 pieces) is really good in terms of diet. If you have recently started AIP, you may find that your A1c is just going to naturally improve from here. Remember though, as per the other information in the post from Kresser, a more accurate picture can be formed w/ more data, your fasting blood glucose & your post meal sugars. I would say you can ask your doc to monitor fasting & pick up a glucose monitor to track the other.

  2. Tara F

    When Chris' article came out, I went out and bought the glucometer he suggested and started testing a bit. At the time, I had just been diagnosed with gluten intolerance, malabsorption, B12 and D deficiencies. I had given up gluten already but not gone paleo. My A1C was checked and was 5.6 and my clinic lab's standard range said normal was under 6. I had lost 45 pounds going gluten free, but my stomach circumference was still large and out of proportion to the rest of my body. I went paleo and lost no further weight, no matter what I did. And this summer I gained weight. I started checking my blood sugar again and my FBS in the AMs are highish. Now that my health insurance has finally gone through (7 months of being uninsured due to NY state's backlog I guess) I am going to go back and revisit this with the doc. Thanks for posting. Oh, also, the other side of the coin is an example of a client whose doctor refused to test her for celiac because she was overweight and that the hallmark of celiac is "wasting." So she suffered for 15 years before seeing me, going to my doc and being tested. These things make me angry too!

    1. Angie Alt

      Post author

      Wow! Interesting stuff Tara. Thanks for posting. And agreed!! I also get angry over the "you have to be skinny to have Celiac" misconception.

  3. Kristin

    Angie, our stories are similar. I have Hashimotos. I had issues with hypoglycemia, then stomach pain, so found a low functioning gallbladder, which led to dx of Celiac (My numbers were extremely high but I had a negative biopsy) Went GF but didnt feel better. I have done paleo but still not feeling better (except the hypoglycemic episodes reduced significantly). I show signs of malabsorbtion and my fecal elastase was 199. Did you have upper abdominal pain as one of your symptoms? I am seeing a gastro to rule out chronic pancreatitis because those are the only symptoms that fit. Did enzymes help? Do you take a proton pump inhibitor too? Im stuck on that med as part of the treatment because it goes against all that I have read about stomach acid (and whether we are low or high)


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