Immune Disease(S), Antibodies.; But. . . Celiacs?

[Lindsy]

Hi,

I don't think I have Celiac's. BUT. . .

An integrative health doctor diagnosed me with it based on lab tests not normally used for such diagnoses, plus Hashimoto's (an autoimmune thyroid disease). Other Dr.'s hadn't diagnosed me, he said, because "they don't know how to read the results." He then filled out a gluten test order, but he didn't run all possible gluten blood tests or a biopsy.

I just got back these results:

Gluten

• 
  
  
• Deamidated gliadin ABS, IGA : 3 units (0-19 is negative)
  
• TTG IGA: <2 (0-3 is negative)
  
• Immunoglobulin A, QN, serum: 239 mg/dl (range is 70-400)
  
• Endomysial Antibody IgA = Negative (Range is pos./neg.)
  
  

Other immune system things of note:

General Immune System

• 1:640 ANA since at least early 2003

Thyroid

• TPO AB = 7 IU/ML (Range 0-34)
  
• Antithyroglobulin Ab = <20 (Range 0-40)
  
• Thyroid Stim Immunoglobulin = 52% (Range 0-139;not sure how if it's really a "%" scale)
  

I have only a few symptoms of Celiacs that I know of. And they could be from my thyroid (i.e., brain fog, constipation, fatigue). And my bad connective tissue (i.e., pain). Except for my yelllow and lined teeth (overbrushing, no other known cause).

My mom's double cousin DOES have Celiacs....so the genes were certainly in my mom's ancestors.

Do I try for further testing? Try an elimination (and go by feel? and/or if gluten or thyroid antibodies drop?)? Or let it go? Does a "negative" diagnosis, combined with a positive #, mean the test allows a little room for error? Or does it mean I do/may have some antibodies, they're just considered clinically/statistically insignificant? What would you do?

Also have insulin resistance and PCOS. A low GI, low sugar, low dairy (because of the high insulin response it prompts), gluten-free diet is . . .rather unappealing!

THANKS!

Lindsy

[Skylark]

Your integrative doctor doesn't know how to read the results! Run screaming!!!! That is a full, valid celiac panel and you don't have Hashimoto's or celiac. Your tests are all at the bottom of the reference ranges and there is no way they are clinically significant - you are in the statistical noise around zero. There is no such thing as a true zero in an immunoassay because of the noise in the assay from nonspecific interactions. I haven't the faintest clue what antibodies you expect to drop because you don't have any. You want to know what a positive TPO looks like? Mine is over 400 on about the same reference range.

You do sound hypothyroid. Did a competent doctor (not the integrative medicine idiot) run a thyroid panel?

There is no harm trying gluten-free to see if it helps your general health. If you do it, you need to be strict until you find out whether you are sensitive and how sensitive. Cheating occasionally will keep any inflammation going and you won't get a clear answer.

You MUST get the insulin resistance under control. You will kick yourself for continuing to eat high GI foods if you develop full-blown diabetes. It's not worth it to sacrifice your health in order to eat certain foods.

I'd strongly suggest you look into some specific carbohydrate diet or paleo diet cookbooks. You need recipes! I'm currently eating grain-free, refined sugar-free, dairy-free, soy-free, and low starch (GAPS diet) and there is PLENTY of great food to eat. I had almond flour banana muffins for breakfast, chicken breast and leftover kale for lunch with homemade pickled beets and coconut bread, and I just finished making a huge pot of beef vegetable soup.

[Lindsy]

Skylark,

THANKS!!

To be clear--which I do bad at when aiming for brevity!--the Dr. wasn't going by that to diagnose Hashimoto's. An endocrinologist first diagnosed thyroid antibodies in 2003 (age 19) and said I'd develop hypothyroidism. The integrative Dr. found out the diagnosis from me and assumed I had celiac's from that (because he thinks Hashimoto's is always Celiac's based), plus I'm not sure what. The only notable things I saw in the labs he was looking at were my monocytes and one other thing. . . lymphocytes, maybe?. . . being slightly out of range; he didn't explain how he reached his conclusions when my mom pressed him. And I'm not sure why he sent me for a gluten test after diagnosing me. (By the way, I have no plans to go back after what you said!)

I went looking for the connection he claimed between Hashi's and Celiacs, found they only seem connected in a small number of cases, and came here for advice. And am I glad I did!!!

I was diagnosed with a slight goiter by two doctors and a bit of asymmetry. My TSH has crept up over the years (aside from swinging down once last winter, of all the times to lower!). And my reverse T3 was top of the range. But when I just showed my rheumatologist who manages my connective tissue the labs, he commented the thyroid antibodies had gone down. I have no idea what the original levels were, nor what caused the drop. But what good news! Guess I need to learn how to read lab reports.

Thank you so much for the clarification!!! That makes my life MUCH simpler. And helps me quit fearing my immune system is going crazy, attacking everything.

If you don't mind a question related to insulin resistance since you seem to know a lot about lab results . . . are proinsulin levels a good measure to gauge insulin sensitivity? My resistance was diagnosed on a fasting insulin level of 21 (not sure of the unit measurement)in April or earlier. Following Dr. Neal Barnard's Program for Reversing Diabetes: The Scientifically Proven System for Reversing Diabetes without Drugs and a warning dairy causes high insulin surges, I put myself on a low fat, low dairy, low GI, high complex carb diet (contrary to the common low carb approach). I seemed to improve. I felt better. My hyperpigmentation lessened, as did cravings. From some combination of that, some vitamins I read help with insulin senstivity, vitex, d-chiro-inositol, and exercise, my female system got MUCH better. A Dr. ran a test to try and confirm how I was doing with insulin levels. Though I'm very skinny, I still somehow have something of a belly. Well, my proinsulin showed 1.5 pmol/L (range = 0.0-10.0). Is that a good indicator my insulin is better controlled? Or is that not a good test for measuring insulin resistance? (A1C was 5.0 on a 4.8-6.0 range; I didn't expect that to be elevated since I know insulin can be elevated years before glucose ever elevates.)

Thank you SO much!! My weird diet would be a lot easier if I could let up just one of the many restrictions; and adding in gluten gives me one way I can do that. Plus I've already spent over 7.5% of my income on health stuff (e.g., Cobra because health insurers won't touch me!)

[Skylark]

Wait - you aren't eating gluten? How long have you been gluten-free? Celiac tests are not valid on the gluten-free diet and you also may have helped the thyroid inflammation. If it's only been a few weeks you probably wouldn't change the tests.

The link between gluten and thyroid is possibly a cytokine called IL-15. If you're gluten intolerant the intestine tends to make IL-15 in reaction. It can travel in systemic circulation and inflame your thyroid gland, leading to hypothyroidism and autoimmunity. IL-15 in the intestine is also thought to be involved in the development of celiac disease. There is a researcher named Dr. Kharazzian who says ALL Hashimoto's patients should be 100% gluten-free.

There are also opiate-like peptides in wheat and milk. Both have been implicated in autoimmunity. Immune cells are covered in endorphin and enkephalin receptors and if you have digestive issues (poor protein digestion, leaky gut) the peptides get into your bloodstream and misdirect your immune system. For this reason, both wheat and milk may be a bad idea if you have autoimmunity.

It sounds like more conservative doctors have diagnosed you with Hashi's in the past. The antibodies can come and go. Whatever you are doing seems to be working pretty well for you. If it has included gluten-free you might think twice about adding gluten. Wheat foods tend to have a high glycemic index anyway. If you've only been gluten-free for a short time and had such nice labs, including the low proinsulin, you could try adding wheat and see what happens.

[NicoleKnott]

I was just diagnosed with Celiac and I have been living with Hashi"s for about three years now. I was given a list of foods to eat and foods to not eat and that's about it. I am having a hard time because I do not show any of the classic signs of having Celiac. I could go and eat an entire pizza and I wouldn't feel any different than I do now. My doc assures me that I will notice the change once I have been of gluten for a few weeks. I was hoping that someone could just give me some basic information about the blood work results. I do not have my paper with me but I remember being told that my blood scored a 12. My sister who was just diagnosed a month before me and shows all of the classic signs - abdominal pain, bloating, etc also scored a 12. Can someone please tell what that means? What's the range your number should fall in? And is there any significant difference in score a 35 over scoring a 12??

Anything information you can provide me will be welcomed.

[Skylark]

Hi, Nicole. Welcome to the board. People are very likely to miss your question when you post in the middle of someone else's discussion. It's also very confusing. You will get more help and answers if you start your own thread to ask a question. To start a thread go to the part of the forum that seems relevant and click the "Start new topic" button.

Every lab has different ranges for its celiac tests. A number like 12 doesn't mean anything at all to us without the normal range. You can't necessarily even compare to your sister unless she had exactly the same test from the same diagnostic lab. You probably had a positive test for autoimmunity, and if so there is not much doubt that you're celiac. It runs in families too. Higher numbers don't necessarily indicate more severe disease or intestinal damage.

[NicoleKnott]

Hi, Nicole. Welcome to the board. People are very likely to miss your question when you post in the middle of someone else's discussion. It's also very confusing. You will get more help and answers if you start your own thread to ask a question. To start a thread go to the part of the forum that seems relevant and click the "Start new topic" button.

Every lab has different ranges for its celiac tests. A number like 12 doesn't mean anything at all to us without the normal range. You can't necessarily even compare to your sister unless she had exactly the same test from the same diagnostic lab. You probably had a positive test for autoimmunity, and if so there is not much doubt that you're celiac. It runs in families too. Higher numbers don't necessarily indicate more severe disease or intestinal damage.

Thanks! Everything is so new all of a sudden. I am still poking around this site to try and figure everything out. There seems to be so much to learn in terms of cooking and support!