Monday, July 23, 2007

Finally getting somewhere

I went to the GI today in response to my 6 month follow-up blood work. As I had mentioned in the past, I was not thrilled with my doctor. Absolutely no communication. I went to a new GI today at Rush Hospital. He works with the dietitian I have been seeing. I am kicking myself for not going to see him in the first place. All of my other specialists are located at Rush. I had to break the mold once and go to Northwestern. (OK, it is a wonderful facility, as well. I just had no luck.)

Anyhow, Dr. Demeo is great. He took him time, talked through everything. He actually read my chart and referred back to items in it. While he never flat out said it, based on his reaction to the fact that I was severely anemic in college and I was diagnosed with an IgA deficiency when I was 8 years old (although that went away), he feels that I have probably had Celiac far longer than I have had GI symptoms.

I finally got a bit of a translation of my blood work. The normal range is a ratio of 1:10. My level is 1:160. I would say that is a bit high. Unfortunately, he does not use the same blood test as my previous doctor. Dr. Demeo uses the TTG. While he is not going to run that one right away, I had blood drawn to check my folate and B12. I need to schedule a DXA scan. He is requesting the results of my last CBC, and he is asking for copies of the slides from my endoscopy. I will probably be going in for a follow up in a few months.

He has a strong belief that the GI system, and especially Celiac, effects more than just stomach and bowels. I believe he referred to Celiac as being a multi-system disorder. Just by touching my shoulder he was able to tell me I have allergies (if you scratch your skin and the color changes to super pale, that is an indicator.) He also knew that I would get cramps (sorry guys) mid-cycle during ovulation and was able to point out exactly where I felt the cramping. Incidentally, the pain is not located near the ovaries. This is apparently connected to Celiac. Eh? Not sure if it is 100% true, but the man knew these things before asking me.

He said in all likelihood that I have been eating fine, but the extent of the damage is probably severe enough that it is taking a while to heal. The long and short of it is that I need to continue the diet and food journal (possibly adding symptoms to the journal), do the tests, pray I do not have osteopenia or (worse) osteoporosis. The strongest order from both the doctor and the dietitian (who came in and spoke with me again) is ti eat more and gain weight. When was the last time you heard a doctor tell a patient to gain weight?


eep said...

I am really, really glad to hear all this. I'm glad you found a new doctor who can actually give you some answers and point you in a direction that will lead to a better, more comfortable life. I'm really so pleased for you.

Now go eat a loaf of that banana bread already! ;)

ElwoodCity said...

Congratulations. It is so nice to get specific information. Also, how great is it to be told that you are doing just what you need to do and just give it more time?

Lynn Barry said...

He isn't a DR he's a GOD! HUGS

Ginger said...

Interesting, my new doc said that he thought my back pain might be associated with Celiac. I am happy you do not have osteopenia! I just found out that I do. At least this doc thought to have me tested for it! It takes a while to heal. I felt loads better after about 8 - 10 months of a GF diet.
Have fun gaining weight and I will try to do the same to loose it!

Tevis said...

Okay, I know that I just left you a comment on another post, but I have been reading some of your posts and we are so similar (and we both live in Chicago). I've had celiac for only a year now (well, since being officially diagnosed) but have been eating gluten free for over 8 years. My skin goes crazy when I have gluten, and honestly, my entire body goes crazy. I think that gluten, in a body that has celiac takes a toll on everything in your body. Actually, my mother and grandfather both have celiac, and my mom has a website that's devoted to healthy living with the disease ( In fact, I just am getting off of a digestive detox that has made a world of difference on how my body feels. I've also started taking some GI enzymes that seem to be doing a world of difference too. I hope you are doing well and that I'll talk to you soon.