High Antibodies; Doc Was Biopsy To Check For Cancer?

[emoliver]

I'm a 25-year-old Type One diabetic, diagnosed with diabetes when I was 12. Shortly thereafter I was diagnosed with chronic fatigue syndrome after I failed to recover as expected from mono, but that issue has been gone for years and years.

Last July I gave birth to my first son after severe pre-eclampsia and HELLP syndrome. He was 33 weeks, so 7 weeks early. My blood glucose control was in the 7's and 6's during pregnancy, so it was pretty darn good.

I was diagnosed with post-partum hypothyroidism after pregnancy, though it appears that there was a lapse of a month or two before it began. My thyroid levels have been normal for several months now.

I began wondering if I had Celiac a couple of weeks ago after picking up the magazine Living Without at a store. I have read studies about gluten and a protein in milk possibly triggering the Type One diabetes disease process in predisposed individuals. I do not know if my son is predisposed, but there is that potential. Consequently, I have him on a gluten- and dairy-free diet. I picked up the magazine and was reading it for his sake. An article on Type One diabetes and Celiac talked about some Type Ones having Celiac and not knowing it for years. It also talked about Type Ones who have Celiac having inconsistent absorption. Sometimes I'll find a meal that works great with my blood sugar levels for weeks only for it to change and react poorly for no apparent reason.

Because of that and that alone, I asked my endo last week to test for the antibodies. She didn't think I had them but pulled for one, I believe, though I'm not sure which. Friday she sent a secure e-mail saying that my antibodies were very high and that I could get a biopsy or just go gluten-free. This evening she followed up to my response and said most doctors would recommend that I get an endo and/or biopsy to make sure that I don't have a rare type of lymphoma that is sometimes associated with Celiac.

I did a bit of research on it, and now I'm panicking. I really think that I may have had Celiac for the past 13 years, since shortly before my Type One diabetes diagnosis ... though I also think it's possible that the pregnancy somehow triggered it. If I've had it for over a decade and been untreated, I'm worried that I'll have the cancer.

I'm pretty paranoid. Thoughts, anyone?

THANKS!

Erin

[Takala]

Take a deep breath and pause.... you are far, far more likely to be celiac than to have a rare cancer.

Sometimes the biopsies miss the damage. SOME doctors still will not give a solid diagnosis because of that, but this is slowly changing. So, based on the doctor's first recommendation, after your very high antibodies in the blood, after the rest of the tests are done, give the gluten free diet a whirl and see how you do. Don't forget to check medications to make sure that they are gluten - free, also. The necessary levels of meds may change as you heal up internally, and your various body systems start responding differently.

If you find yourself going on a gluten free diet, and then becoming much more sensitive to gluten after a period of time off of it, you will have your answer, as this does not happen to normal people.

[Skylark]

Because of that and that alone, I asked my endo last week to test for the antibodies. She didn't think I had them but pulled for one, I believe, though I'm not sure which. Friday she sent a secure e-mail saying that my antibodies were very high and that I could get a biopsy or just go gluten-free. This evening she followed up to my response and said most doctors would recommend that I get an endo and/or biopsy to make sure that I don't have a rare type of lymphoma that is sometimes associated with Celiac.

Damn doctors. They say this stuff with no clue of how it will make you feel. The biopsy is to get a baseline and see how bad the celiac damage is, not specifically to look for cancer. The lymphoma is super-rare, with an incidence of only 1 in 50,000, and it tends to happen in people over age 50.

It's good you figured out the celiac. Yes, pregnancy is a very common trigger and that may be what happened. You should feel much better gluten-free!

[MitziG]

Your dr is a dope. The chances that you have intestinal lymphoma are remote. Most celiacs go years and years undx...and while we are miserably ill, cancer is a rarity. So don't worry about it. That said, you DO have celiac, and at least she recognizes that. Celiac is generally a pre-cursor to type 1 diabetes and thyroid issues.

Endoscopy isn't a bad idea, just to asess the current state of your intestines. Keep eating gluten until then as it will affect what is seen. Then, regardless of what the GI says, go gluten free. Many aren't educated about celiac disease.

Spend some time on this board- your questions will be answered and your mind put at ease. And good for you in being proactive with your son!

[1974girl]

I had a fear mongering doctor with my daughter. I switched. He mentioned everything in the sun that could go wrong. Honestly, I think they say that stuff so you won't just say "I'll go gluten free without the biospy". If you do that, they lose $$$$$$. Is there not some sort of blood test that would show lymphoma? (I have no idea) My husband is type 1 and together we had a celiac! She shares the DQ2 and DQ8 that makes celiacs but it also predisposes you to diabetes. I am not dairy free with her but I am gluten free. I hope that helps. She is almost 12 and we feel like we are just holding our breath. I found out yesterday that there is a woman at our church with both type 1 and celiac. I will have to track her down. Those 3 (type 1, Hasimotos thyroid, and celiac) go hand in hand. I am sure you don't have the cancer but if it makes you feel better and you have good insurance, then have the biopsy.

[1974girl]

also...on Fox News this morning, they were saying there was a rise in Type 1 diabetes in children and they think it is from all the antibacterial stuff we are using today. We are keeping too clean. I had to wonder if it is the wheat crop that they have messed with.

[frieze]

your wee one is blessed! the things we happen to read in the check out line, at least this was useful, lol.

[emoliver]

You guys are so wonderful!!!!! Thank you for your answers, time and kindness. I sure appreciate it and feel much, much better having read your replies. It's funny -- I considered myself asymptomatic except for the sometimes inconsistent glucose absorption that I realized only because I monitor for my Type One Diabetes. I went gluten-free for 48 hours until my doc told me to go back on before the biopsy. Now I feel tired, foggy, my heart palpitations are back and I actually am having some stomach pains. Weird.

And thank you so much for all the info about Type One/Celiac! So odd about the antibacterial stuff. I am going to go look that up! THANKS EVERYONE! xoxo