New diagnosis, blood antibody questions

[Meg k]

Hi everyone. After getting a c.diff bacterial infection and not showing recovery after it was cured w/ antibiotics, I was finally referred to a GI after 4 months of diarrhea and losing 15 pounds. They did bloodwork and my TTg IgA came back as 250+ U/ml. I had an endoscopy the next day and when I was wheeled out the doctor told me that I needed to eat gluten free the rest of my life and to see him in 6-8 weeks. Two days later I got a call confirming I have celiac disease. I was diagnosed last week  

I have done a lot of research and started gluten free eating right away. I see a dietician next week. My diarrhea cleared up the first day, which is amazing after having it many times a day for 4 months. I have a lot of questions since I don't see my doctor for a while  

Questions: With the antibody 250+ is it likely I have had celiac untreated for a long time or is it hard to put a timeline on things? I have been generally very irritable, somewhat depressed, anxious for years. With a level that high, how long till it comes down and my intestines heal? Also, I exercise a lot (run long distances and longer triathlons) and wondering if that's okay to keep doing as I heal. I was sidelined for a while w the c.diff and weight loss. 

 

Thanks! 

[kareng]

You probably have had it for a while.  but no one really knows.  

 

Run if you feel like it.  

[ironictruth]

I may not actually have celiac, but one doc I had felt that my blood sugar was dropping when I would get these spells of feeling really bad. My primary had theorized perhaps anxiety attacks but then I discovered that my heart rate would slow way down into the 40's/50's.  Sometimes my BP would drop too. Back then I was working out 3-5 times per week and the original doc told me to stop for awhile. He did do a sugar test and the last draw was a touch low, in fact, it really was normal-low.  I was not convinced as I bought a sugar monitor and never caught any real low readings during these episodes.  My co-workers even told me I would turn very pale during these episodes.

Not really sure if it was sugar, but whatever it was, I can say that anytime I would eat during these episodes, I felt better and I was already eating breakfast, 2 lunches everyday (first and second lunch, lol), a snack or two, and dinner. I never lost more then a few pounds but I certainly did not put any on. Well, maybe a couple now post holidays without any workouts. For a long time I carried a protein bar with me and dried fruit.

I am still sick, but since I stopped running in July (so sad, looking forward to getting answers and getting back to it) I no longer get these specific episodes.

So just be very careful. You may feel good, and that might be fine, or you may be low in some random nutrient and running will deplete this even more. All I can say is that I had no idea what the heck was happening, but it would vanish when I grabbed something to eat. I was out for a walk on my lunch hour with my boyfriend one day and an episode hit me. We sat on a bench and he ended up going back to work. I sat in my car and ate a salad with chicken I had packed in a cooler. 15 mins later I was fine. I have numerous examples of this. I do know the longer I  let the episode last and the longer I took to eat, the longer the recovery.

So maybe shorter runs with some walking, some nice protein smoothies after. Carry craisins and a protein bar with you.

 

[PinkyGurl]

Interesting question for sure.  My TTG Iga was 48 and I had no villi severe damage.  We are very sure I became celiac when I was 12 as my symptoms started then and not on single MD connected the dots.  I'm 34 when diagnosed.  My endocrine said that often times when you've had a autoimmune disease for a long time you antibody levels are actually lower because after so long you body just can't keep up with production.  So that manner of thought then the high high antibody levels could indicates the beginning of the disease (and by beginning it could be months or even a year or two).  All interesting thought processes.  As for your level it will drop eventually especially if you are being very VERY careful.  Replace anything used with gluten that is porous (plastic utensils, wood utensils, cutting boards) also replace collenders and toasters or toaster ovens.  Be careful also clean your oven well especially if you've made pizza on the rake.  Also avoid eating out for at least 6 months.  Eating out is a crap shoot at best and you want to allow your body time to heal.   Make sure your MD tests your vitamin and mineral levels as well as a bone scan to make sure there are no deficiencies or bone density loss.

[Meg k]

Thank you all for your input.