Not Sure How Much More I Can Take.

[MChase]

I had an endoscopy and colonoscopy last week. I did not get to see the Dr after the procedure. I only saw him when I was first brought into the OR. He did take 7 biopsies (but I have no idea from where). I asked the nurse when I woke up and she had no clue. Dr told husband, there was nothing major to worry about. There was no visible damge to anyrhing. He said I had excess amount of acid in my stomach, dx gastris, gave rx for prilosec, and not to go gluten free. He wants to see if prilosec works. He prescribed prilosec 3 weeks ago (same dosage), so wouldn't things have improved by now? I do not have a follow up as of now. I am supposed to wait until I hear from them with test results which can take up to 2 weeks. When my PCP suggested Celiac, I asked her about blood tests. She said that the GI would do those. When I asked him, he said we will do the endoscopy and colonoscopy first to rule out other things. And that the endoscopy was the gold standard for Celiac.

So right now, I am supposed to eat "normal". But I am miserable. I've been avoiding gluten for 2 or 3 days, then eat it for 2 or 3 days. I start feeling better by the middle of day 2 of gluten free. Yesterday, I had 1 piece of toast and today I feel horrble. I ate canned soup and 5 crackers for lunch today. I was in the bathroom within 20 minutes. Now im crampy, back aches, headaches, crying, feeling sad, tired,, ears ringing, leg pain, etc. I just want to crawl into a ball under the covers.

Not sure what my question is. I just don't know how much more of this I can take. My husband says "we'll get through this", but im not so sure. Although he says he supports me if I choose to go gluten free regardless of the dx, I have my doubts. When I eat gluten, he asks why I did that when I know what it does to me. But then when I say I might not have a choice about going glutenfree, he says the GI said there is no visible damage so if I have Celiac, its really not a bad case of it (husbands words not dr). So a positive diagnosis would help prove that I need to go gluten free.

As a side note, I have a 13 yr old son. If I'm positive I need to get him tested. Even if I go gluten free, he would not be since he eats school lunches. But if he is positive, he would have to start taking his lunches.

[MChase]

I guess my question is. . Do I have to eat gluten every day for blood tests since I have not yet gone gluen free? Can I skip a few days of gluten and still have accurate blood tests?

And how do you get family on board with a gluten free lifestyle? When I talk about gluten free foods, husband looks for gluten free replacements (poptarts, waffles, bread, etc). I keep telling him gluten free does not mean healthy. He also keeps reminding me that gluten free food is more expensive and we cannot afford to replace kitchenware. He says we'll do it a little at a time. But I'm worried about cross contamination. As far as expense goes, I'm spending about $200 a month(out of pocket) on Rx , not counting otc medicine and dr visits and antibiotics (several times a year). I quit taking some of my meds because ofbthe expense. If took everything im supposed to it would be $350-400 a month.

[Adalaide]

Yes, it is my understanding that you have to eat it daily to have accurate blood tests. There is also no such thing as "really not a bad case" of celiac. You either have it, or you don't. It can be more seriously progressed and have caused more damage, someone can have had it undiagnosed for long enough to have much more serious symptoms than someone else, but no one ever has it "worse" than someone else. It's like answering a yes/no question. My point is, if you have it you have to take it seriously, because even if you didn't have visible damage it is still a serious disease with serious complications.

 

I should point out that there is no reason your PCP can't order the blood tests since your GI didn't. Get them done sooner rather than later and you can simply go gluten free without waiting for the results since it seems to be helping.

[GottaSki]

I agree. Ask your primary to run a complete celiac antibody panel as it is strange that gastro skipped this step. As soon as blood tests are complete remove all gluten. You may find your family will be onboard once you regain health gluten-free.

Hang in there

[cyclinglady]

Excellent advice from the others!!!

 

Going gluten-free is NOT more expensive!  My entire household is pretty much gluten free except for pre-packaged gluten foods my daughter takes to school.  She actually prefers my homemade gluten free goodies over any store bought item.

 

I spent less than $50.00 replacing a cutting board, some plastic ware, colander, toaster, wooden spoons and a few other kitchen items.   Second hand stores are an excellent source for glass bakeware and stainless pots and pans.  

 

Good luck to you!  I'm sure your family will come around.  My daughter is always finding current event articles for her health class each week.  She's becoming an expert on Celiac Disease.  Education can conquer a lot!