More Questions!

[Boffin]

Going through this I seem to think of more and more questions all the time - and there is no one else I can ask but you lovely people here! My doctor seems to know nothing about coeliac!

So, I've had my positive endomysial antibody test, which as far as I'm concerned, coupled with all the symptoms I've been having, makes coeliac certain for me. I still have to wait for the biopsy to get the official result unfortunately though.

In the meantime I continue to feel steadily worse and progressively more and more tired. Next week I'm going to Italy for a long-planned and much looked forward to holiday, the sort that is quite a one off for us. At the moment I should be really excited, but instead I feel sad as I'll be going to all these fabulous places for the first time, but feel soo tired and unwell that I don't feel I'll be able to fully enjoy it.

I can't go fully gluten-free now (waiting for the biopsy, plus we're staying in several hotels, all of which were booked before I knew about the coeliac thing) but do you have any tips of how I could improve the way I feel?

Would going "low gluten" and avoiding it where possible do anything at all?

Would taking vitamin supplements help or would they not even be absorbed? (I've been led to believe from reading posts on here that my EMA positive test means that my poor old insides are already really damaged. )

When out and about in Italy if I'm sufferring diarrhea, would taking anti-diarrhea pills help or is it not a good idea (I have no idea about taking these as a coeliac) ?

This also leads to another question about taking medication? If my intestines are all damaged and not absorbing properly will medications such as hayfever pills or headache pills, or anything really be any use? Presumably I must be absorbing something otherwise I'd be losing weight more rapidly?

I think that's enough questions for now, although I'm sure there'll be more! Thanks again for your help.

[darlindeb25]

I don't understand why you can't go gluten free now, you already had the biopsy. Gluten is gluten, alot or a little, doesn't matter--none is what you have to aim for. When taking meds, you must make sure they are gluten free too. As for taking imodium or something else for diarrhea--I always found it did make me feel better for the moment, but the next day, I paid--the diarrhea would be even worse. I always found it was better, for me, to let it run it's course and go on from there.

There are no easy answers, there is no "part way" with gluten. If you are gluten intolerant/celiac, then you will not feel better until you are gluten free.

[jerseyangel]

Hi Boffin,

I understand how you feel about going on vacation with all of this going on.

The thing about the gluten-free diet is that in order for it to be effective, and for you to feel better, you need to be completely gluten-free. Just going gluten-lite won't be enough, I'm sorry to say.

I've never been, but I understand from people who have been to Italy that it is very easy to stay gluten-free while there. Hopefully a few of them will see this and let you in on how to best do this.

As for taking Immodium or something similar--personally, I use it when I'm not feeling well and I have to be somewhere. It works well for me and has gotten me through many times. I have never felt any worse later on after using it.

It's one of those things that can effect different people differently--so I'd suggest you try a dose before your vacation, and see how it affects you. I was just at my gastro on Friday--he suggests Immodium or an antispasmodic like Neulev when needed. The Immodium slows the passage of food through the intestines, and an antispasmodic calms the cramping, if that's a problem.

Good luck with everything

PS--You are not a pain! Ask as many questions as you have--that's what we're here for

[gfgypsyqueen]

If you already had the biopsy and blood work completed, you can go gluten-free now. The gluten-free diet can't hurt you and presumably you will feel better. Learn as much about this diet now. Try to understand the naturally gluten-free foods. Fresh fruits, cheeses, veggies, eggs, plain meats, etc. I find breakfast to be one of the easiest meals to eat out (scrambled eggs loaded and potatoes). These will be easeir to order and find when traveling. You can always find an apple or banana, but can't always find gluten-free bread.

In my opinion, you feel terrible now. You sound pretty convinced you have celiacs. Why wait? GO gluten-free now. Go order translation cards in Italian now. You should get them before your trip.

If your intestines are as bad as mine when I got diagnosed, you are not absorbing much and your bowels make you miserable all day. Try to find liquid vitamins and supplements. Drink some Ensure supplement drinks. I believe they are gluten-free. (My gastro was very nice and funny but basically said you will know more about this disease than I do in a month. He was right. He needs to see signs and diagnois, but if you don't live the disease it is hard to keep up with. He also commented on my absorption being so terrible he was shocked that any meds worked on me.)

Bring all of your med supplies with you to Italy. Talk to your doctor and see if he will give you a letter for the special foods and meds "medically necessary diet" etc. Bring it to get the food thru custums. Don't ask or comment to the agents about the food, just have them in your bag. Provide the letter if you get questioned. Keep in mind, in Italy they test everyone for Celiacs by age 6! They should be very accomodating and it will be easier than you think.

I traveled to Mexico about two weeks after my diagnosis. Food was a challenge at times and I didn't get to eat everything, but I think I did great. I brought cereal, cookies, instant pasta meals, etc. I barely ate them. I ate all meals at restaurants. One of the nice things is that I was still healing and learning, so if I ate something with Gluten I didn't get too sick. Now if I have the slightest gluten contamination I am a mess for a week. (It's been 4 yrs gluten-free!)

Have a great trip!!!

Please ask more questions, we've all been lost and overwhelmed at the beginning! Plus people on this site share their tips and tricks to dealing with Celiacs. And it helps!

[Boffin]

Thanks so much for the replies everyone.

The key is that I HAVEN'T yet had the confirmation biopsy. I obviously didn't make it properly clear in my initial post, sorry! (I think my brain is nearly as messed up as my intestines! ) What I mean is that with the positive blood test, PLUS all my symptoms I'm quite sure that I have coeliac. The medical profession still want to confirm by biopsy which is a pain, but people have told me that this will help to establish how messed up my intestines are and what sort of follow up is required so I suppose that I have to accept this.

It makes sense that just cutting down gluten rather than missing it out completely won't help and that's what I'd feared. I am very tempted to just leave it out totally now but I'm technically not meant to do this until after the biopsy and I still don't know when that will be.

I had heard previously that Italy is quite on the ball as far as coeliac is concerned, but I hadn't realised that they test everyone by age 6! That's amazing. If only I was able to leave out the gluten it seems that it would be a good place to be able to do so.

In the meantime I suppose I will have to press on with eating the evil stuff but the tip for getting liquid vitamins is a good one as they would obviously be more easily absorbed. I will look out for some.

Also good to know that taking anti-diarrhea pills should be fine too if I really need to. I just wanted to check in case doing so would mess up my poor insides even more than they already are!

Thanks again for the help and the lovely welcome. I am busy learning and gathering heaps of information at the moment so that I'll be prepared once the biopsy is out of the way.