LADA but slow onset

15 or more years? Whoa!! I’ve never heard that.

Did your doctor just order the screening TTG test? It is the preferred test (cheaper), but it does not catch all celiacs (like me). If my GI had not ordered the complete celiac panel, my diagnosis would never have been made. I had no GI issues and just went in for a colonoscopy (yep, I am over 50). I did have anemia and Hashi’s which are risk factors. I was shocked.

Hmmm, not sure. What is included in the complete celiac panel?

HI Tim,
Why would you want liver tests run? the 3.5 was for a fasting Insulin- not glucose. is that where you got the number 63? you thought i was talking about fasting glucose? All 5 of my tests reflecting liver function were normal:
ALP 38 / reference range 33-130(reference ranges are for Quest Diagnostics)
ALT 14 (6-29)
AST 15 (10-35)
bilirubin 0.3 (0.2-1.2)

based on plugging my fasting glucose and insulin numbers into a formula to calculate insulin resistance/sensitivity (HOMA-IR), i am very insulin sensitive. yet i have had an a1c of 5.9 eating a the recommended diet of whole grains/fruit/vegetables meat etc. MY OGTT stayed at 128 one and two hours after the test, so my insulin seems to have just run out. my mom as diagnosed as type 2 in her 60s, but was totally insulin dependent within 5 years. my dad just takes 2 metformin pills, but has had complications which he always blames on something else. my last a1c was 5.1 eating low carb. according to my GP i have less than 50% stenosis in my carotid arteries, but more than he is used to seeing in a woman my age (52). i am following up with a neurologist to get a more nuanced view since the carotid doppler my GP ordered was triggered by my mini stroke symptoms. my blood work is all good except for iron deficiency anemia (heavy periods), low lymphocytes for at least 2 years and increasing infections hitting in the spring, and a low calcium (8.2, ref range 8.6-10.5). i have a risk allele for the TCF7L2 gene, which is associated with reduced insulin secretion. i am thin except for my abdomen.

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My mistake. I thought you meant you had a 3.5 mmol/L (63 mg/dl) glucose lab reading after fasting.

I am not familiar with the term “fasting insulin” and mistakenly thought you meant blood glucose level (BG).

no problem!

I have tested repeatedly at very low fasting insulin (less than 3.0 five of six labs, 4.1 on the last…), although I’m not sure if there are standards or whether it is lab-specific. Five of my six fasting insulin results have been “below reference” since diagnosis, and was why my docs started thinking I might be Type 1 rather than T2 (as first diagnosed).

As for my diet and supplements, I got that info for sure! :slight_smile: I’ve cobbled together my routine from a mix of medical (metabolic specialist MD) and online diabetic experience, and come up with the following:

  • I eat ~50(+/- 10)g of digestible carbohydrate a day
  • I eat 30-40g of dietary fiber per day (so 80-100g of total carbohydrate per day)
  • I eat 1g of protein per lb of lean mass minimum, and closer to 1g of protein per lb of bodyweight (so for me that’s between 150g and 175g per day)
  • I eat enough fats to make up the caloric difference between my carb and protein and my TDEE
  • I track what I eat very closely in MyFitnessPal app and website

In practice, that means I eat the same things quite often: nuts (almonds; pecans; peanuts); roasted broccoli and cauliflower about 5 days a week; some carrots on the weekend; salads; olives; chicken; lean pork; fish (trout and salmon, primarily); a little beef on occasion; heavy cream; eggs; butter; cheeses; olive oil. Those are, for better or worse, my staples. And my labs say it’s for the better :slight_smile: My lipids are in good shape, low blood pressure, etc.

As for supplements and meds, I take the standard-issue diabetic regimen for those not yet on insulin:

  • 1000mg Metformin ER
  • high-dose Niacin (1500mg/day)
  • high-dose D3 (1,000 iu in Summer / 5,000 iu in Winter)
  • one-a-day multivitamin (sans iron)
  • high Omega 3 fish oil (about ~3,000mg of Omegas for me per day)

I also take other supplements because I exercise a lot and rather intensely, and have found the following to help (especially since I eat low-carb):

  • Potassium (low-carb depletes water and electrolytes)
  • Magnesium (electrolyte depletion)
  • Lite Salt on all my food and in my drinks (electrolyte depletion)
  • High-dose sublingual B12 (seems to help with energy levels in the mornings)
  • Creatine (helps to avoid muscle-loss while maintaining or cutting on low-carb diets)

Because of protein and fiber needs, I use some nutritional supplements:

  • I eat fiber-enriched, low-carb breads (Flatout flatbread or Mission Carb Balance tortillas) or make my own breads from wheat bran, oat fiber, gluten (I am most definitely not gluten free haha), almond flour, etc.
  • I use Metamucil (wheat dextrin) or Psyllium husk, both of which are soluble fibers, if I can’t hit my fiber goal from whole foods and breads.
  • I use zero-carb Whey Protein to hit my protein goals on days I lift heavy weights.
  • I use erythritol as a favored sugar alternative, since it tastes fine to me, doesn’t seem to affect my BG at all, and doesn’t cause me GI distress.
  • I use unmodified potato starch (a “resistant starch”) to help blunt BG increases from intense exercise.

All I can say is that it’s working for me, in the sense I’m maintaining good BG control, weight, and general fitness. My only diabetic complication on diagnosis (mild peripheral neuropathy) has resolved itself. Last A1c was 4.6%, my calculated cardiac risk (from lipids) is <3.0%, and my kidney and liver function are normal. The only “markers” of poor health or disease for me are T1 antibodies and low white blood cell count. I’m not suggesting that my routine is any kind of “cure” or even treatment for LADA, but it is what has worked for me. My theory on that is pretty straightforward: my family (three other T1 diabetics in three generations including youngest brother) suffers from a very slow-onset version of LADA, and mine was caught very early in the progression. Given my family history, I’m fairly certain that if I live long enough (which I hope to) that I will become insulin-dependent, but it took my grandmother about 20 years from diagnosis to become fully insulin-dependent, and my youngest brother went 10 years.

I’m in a holding pattern as far as treatment goes until something changes: if my labs or BGs get wonky again, then my med team will re-evaluate whether I need basal or bolus (or both) insulin.

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Here is a good link from Quest Diagnostics regarding the Celiac Panel. This also links to the tests involved in the panel.

http://www.questdiagnostics.com/testcenter/testguide.action?dc=TH_CeliacPanel

Note that blood work (Celiac Panel) is only considered a “screening” for Celiac with the “gold standard” for diagnosis being an Endoscopy. I would never suggest an Endoscopy (for Celiac diagnosis) unless your doctor reviews the blood work and between the patient and doctor, it is decided to be relevant.

Also bear in mind (as has been previously mentioned) gluten should NEVER be removed from your diet prior to being tested for Celiac Disease either via bloodwork or endoscopy.

My endoscopy was ordered at the same time as my colonoscopy (which was just for a cancer screening). During my GI consult, my GI suspected celiac disease due to unexplained anemia. My endoscopy was ordered AFTER my celiac blood panel results.

The Quest link you provided was good, but it does not recommend the DGP tests. I would follow one of the major celiac research centers (e.g. University of Chicago, Mayo (Dr. Murray) or Massachusetts General (Dr. Fasano) or at least follow the American GI Association which is now headed up by Dr. Sheila Crowe formerly Of UC San Diego’s celiac center. If my GI had not ordered the DGP test, my diagnosis would have been missed.

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

The other issue is that some 10% of celiac can be seronegative. In that case, the GI can go forward with an endoscopy.

All celiac testing does requires the patient to be on a gluten diet.

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That is a good point. Whenever you get a “panel” that very specifically does NOT mean ALL the tests. There really is no such thing as “ALL” the tests. A panel is compromised of a very particular set of tests. There certainly could be a test you want which is not in the panel so it does make sense to question exactly what is in a panel and ensure the particular test you are looking for is actually included. As pointed out, it very well might not be.

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LADAgirl2, Congratulations on doing so well on a low carb, gluten free diet! Keep at it, since it’s working well for you and helping to keep your antibodies low. As a Type 1 (31 years) with gluten sensitivity (tested as non-celiac), I would not recommend anyone returning to gluten/grains just for lab testing as recommended by CyclingLady. The inflammation caused by gluten, whether or not from celiac, may have contributed to your GAD65 antibodies and to your increased risk of Type 1. Testing for celiac is not always accurate, and it doesn’t diagnose gluten sensitivity, which can be highly inflammatory as well. So, stay on track. Your improved condition after avoiding gluten should guide your decision.

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LADAGirl2, Just thought of a couple of other things you could do to keep T1D/LADA at bay:

  1. Consider taking an excellent multi-strain probiotic that your doc is okay with during pregnancy. People with T1D almost always have a poor gut microbiome with a low diversity of gut bacteria, which may have weakened our immune systems and contributed to T1D. Probiotics will help fix this problem. You can also check out “Leaky Gut” on YouTube to find more ideas on strengthening the gut.

  2. Iodine is great for optimizing the immune system and should be great for pregnancy. Not all prenatal vitamins have iodine, which is a shame, since babies need it. Check out Drs. Jorge Flechas and David Brownstein on YouTube regarding the subject of iodine in pregnancy and for immune health.

  3. Hopefully you have found a thyroid medication that works for your Hashimotos. If not, a low thyroid condition can contribute to higher blood sugars. I have low thyroid and do well with just a small dose of T3 alone (Cytomel/generic). I also take a bit of iodine for the rest of my system.

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I am sorry, but I did not recommend celiac testing. The original poster is pregnant. Now is not the time to rock the boat. I did provide her with some information that she is free to research. Only the Op and her doctors can determine her best course of treatment for her current health issues.

Antibodies testing is not always accurate for any autoimmune disease. There are always exceptions. For some people, getting a firm celiac diagnosis can make treatment easier. This is one disease that requires the patient to manage his or her own treatment.

If the OP continues to have issues in her lifetime that she thinks could be due to celiac disease, she should consider re-testing. Antibodies can rise and fall with even with hidden cross contamination. Celiac disease can develop at anytime – just like TD1. Plus, this is one AI issue that is proven to be genetic.

No one should under take a gluten challenge without being under the care of a medical doctor.

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Wow! You are describing me exactly! I am 52 and very thin. I diagnosed myself about 2 years ago after learning of eleveated blood glucose levels during a visit to a hospital for pneumonia. Since I had gestational diabetes, after recovering from the pneumonia, I went out and bought myself a meter and started testing after a high carb meal. My numbers were at 198 after an hour!!! Showed my doctor, he was alarmed and checked my fasting and A1c which were all within normal range. Told me to throw out my meter. Of course, I didn’t listen. The next time he check my blood sugars, I took my meter with me to the lab and calibrated it to the lab test. It was within 4 points accurate. Meantime, I went on a very low carb diet. No gluten, no grains, no startchy vegetables. My blood pressure dropped to normal levels, my kidney functions which were nearing the high range of normal became perfectly normal. My energy returned and I was feeling much better. My doctor said I don’t think you are diabetic but since you are obviously feeling better with this diet, you should stay on it and see how it goes. It’s been two years now. My fasting and A1c are still normal but are slowly creeping up. I exercise a lot. 2 hours of reformer Pilates, one hour of weights and 23-28 miles of walking a week. No medication. Last A1c was 5.3. I have pancreatic insufficiency, I take a lot of digestive enzymes, magnesium, B-12, zinc, iodine, D, alpha lipoic acid, and very high doses of probiotics which I can’t do without. Doing fine for now. My guess is that at some point, I will need to be on medication but I would like to delay that for us long as possible.

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I would certainly recommend it - as a non doctor of course.
lol
Seems very strange for your Endo to suggest going gluten free WITHOUT running the Celiac antibodies first. I would seriously question that. In any event, a GI doc is the proper resource for anything Celiac related INCLUDING investigating the possibility of such. If you were to decide to run the Celiac antibody panel and go back on gluten, doing this in consultation with a GI doc would certainly be the reasonable course of action.

Personally I would find significant benefit in a firm diagnosis OR being able to rule out Celiac (at least at this point in time). There are also genetic markers (HLA DQ2 and DQ8 genes) that might be informative which your GI doc could discuss with you. (Or they might simply give you anxiety for no cause - I am in general not the biggest fan of genetic testing.)

From an insurance point of view, it can be difficult to get certain things covered without a particular diagnosis.

I do find it useful for multiple reasons to have an accurate diagnosis.

The most important item in my opinion is as @Cyclinglady states. Regardless of what your Endo or GI or anybody says - I would run everything past whichever doctor is managing your pregnancy. Pregnancy first - time for the other stuff later.

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I actually had all the symptoms of “classic” Type 1. It’s REALLY hard to ignore the constant thirst, continual peeing and wasting away (I’d lost 25 pounds in four and half weeks-- and I really didn’t have 25 pounds to lose).

What I didn’t need right way was mealtime insulin, but my doctor DID put me on Lantus right at diagnosis.

So there were a lot of things screwy about classifying what I had as Type 2. My doctor, in fact, never said I had anything but diabetes.

I sorta wish I’d had symptoms. I’m not sure if it was my diet, fitness level or just a function of my slowly sputtering beta cells, but despite my A1c of 11.8 (which I suppose is fairly low in the scheme of things…), I had none of the classic symptoms, and nothing that could be definitely be attributed to diabetes (as opposed to my age, stress level, environment, etc.). What “symptoms” I had were not such that I had any reason to consider that I might have had diabetes, regardless.

I’ve always wondered how things would have gone, had I not encountered the staph infection that led to my diagnosis.

Perhaps the staph infection took hold, in part, because of the hyperglycemia.

That was the theory that led the doctor to have me tested for diabetes,
yes; however, the pathology report - which, of course, came back a
long time after the diabetes diagnosis, indicated it was a quite normal,
but aggressive staph infection. Once that reportr came in, the doctor
said the infection pobably would have happened without diabetes. The
healing process with the right antibiotic was quick and simple.

Having the antibody results and knowing you will be Type I if/when your diagnosis changes from prediabetic to diabetic is a good start. Oral meds and non insulin injectables that stimulate insulin production put extra strain on the pancreas and may speed progression, at least in theory. So T1s should minimize strain on pancreas to preserve function, or so goes the theory.

Looking back at 9 years misdiagnosed as T2 on oral meds, I should have been on insulin and preserving pancreas’ insulin production capacity for value in regulating BG.