Feeling Hopeless

[ByeByeBagles]

Hi every, this is my first post, and it may be long!

About 2.5 months ago, I began a horrible experience of 15-20 episodes of D per day. I have not had a normal bowel movement AT ALL during this time. I've been two regular doctors that ruled out any viruses or bacteria. I recently met with a Gastroenterologist and had a colonoscopy/endoscopy the other day.

Long story short, they told me they have tested for celiac in my blood twice (negative both times). I don't have the results of the biopsies yet, but the doctor told me everything looked normal.

Because I have had IBS for so many years, migraines, depression and many other symptoms that somewhat point to celiac, I have been told that trying it wouldn't be the worst idea.

So as of 2 days ago, I am gluten free. It has been difficult. After reading a ton of the material, I went food shopping the other night and had to fight back tears because I was so overwhelmed. To make matters worse, I am still feeling just as awful as I was.

So here is my question...Since I have not been diagnosed with this and am not seeing an improvement and I just honestly feel so hopeless, should I give up and wait for the biopsies? What would you do? I just have no idea right now...and if you think I should stick with it, can anyone offer me suggestions for dealing with this hopelessness that I feel? Can anyone relate?

THANKS...especially if you read all of that!!

[harp1]

I say stay on the gluten-free diet. Hopelessness is what i experienced for quite a while. You won't feel the effects of the diet change for a while. Good Luck! Susan

[Lisa]

Welcome,

I am assuming that you have not gotten the results of your colonoscopy/endoscopy? Testing is far from reliable unfortunately.

Continue to try the diet and be as diligent as possible. For you to have digestive difficulties to the level you have had, it will take some time to heal, if gluten is in fact your problem. Gluten can be very tricky and hide in surprising places. Lighten up on your dairy or eliminate it all together. That will help the healing.

We have all felt your frustration and walked in your shoes. This is a great place to learn. Take a walk around.

[happygirl]

While I don't know if gluten is related to your problems or not, if it is, it does (unfortunately!) take longer than a few days to see improvement.

Hang in there. It is overwhelming to begin. We've all been there.

What can we do to help? Do you need help with foods, label reading, etc?

No matter what it is, I hope you find the answer. Best of luck. Welcome to the board.

[psawyer]

If you have symptomatic celiac disease, it will take time for the villi to heal. Some people experience a reduction in symptoms immediately, but for most it takes some time. My own symptoms gradually subsided over a period of about six weeks. I noticed improvement within a week, but it was not dramatic. Two days is just not enough time if you have intestinal damage caused by gluten.

Give it more time to work. The damage wasn't done in 48 hours, and it won't be reversed that quickly either.

[mushroom]

I totally agree with the other posters; that is way too short a time to notice much/any improvement. Unfortunately, it can be a long journey back to good health, but it is well worth sticking it out. All the label reading in the supermarket can be a bit daunting at first, and knowing all the code words that some food processors use for gluten even more so, but bit by bit we learn the language and it gets easier every day. Hang in there, and good luck in your gluten-free travels. And here's a to keep you going.

[WW340]

My first 2 hour trip to the grocery store made me cry. It was so frustrating and depressing, and I came home with very little to eat.

I was limiting myself so much in the beginning out of fear of what to eat, that it made it even harder.

Not to fear, however, it gets much, much easier as you become more knowledable. After a while, you will know what you like out of the many things we can eat.

It is more of an inconvenience once you really learn all that you need to know. It is overwhelming in the beginning.

I found it easier to research things here online and make a list and go find the specific items I found recommended here.

I also picked out one very common fast food resturant and figured out what they had that I could eat, so when caught out and about, I can find one and get something - for me it is Wendy's for chili or baked potato. I don't even have to think about it now, and even better, my husband knows that is what we need to find if needed, so there is no discussion, it is let's find a Wendy's.

Make it as simple as possible for yourself. In fact, the easiest thing is to just eliminate all but fresh meat and veggies and buy safe condiments and spices. Add rice or rice noodles and you can make a lot of tasty meals.

Give yourself a good 2 - 3 months on the diet before you give up. It just might change your life.

You can find a lot of lists here of some basic things to buy, which are mainstream regular groceries. If you need help finding the lists, just say so, and someone will post a link for you.

[RiceGuy]

I also agree with what others have said. It does take more time than just two days. Not to be discouraging, but for some, it takes months. As was stated, avoiding dairy can really be helpful, especially early on in the healing process.

The suggestion of simple foods is also good. Avoid all that processed stuff, which isn't good for you anyway. Stick to whole, natural foods, most of which are gluten-free anyway. Veggies, fruits, beans, rice, etc. If you eat meats, choose plain ones, and add your own spices. There are gluten-free processed meats such as sandwich meats, sausages, and so forth, but you needn't go hunting all over for everything right away. Keep your stress level down, relax, and take it one step at a time.

Although there are prepackaged gluten-free breads available, they can be rather pricey, and not always very tasty. So you'd be doing yourself a favor by not trying to replace all your gluten-filled favorites right away. Homemade breads are by far the best anyway.

One thing you can do at any time, is pick up a package of Tinkyada brand rice pasta. In the opinion of many on this board, it is just as good as wheat pasta. I say it's even better! Many have served it to gluten-eaters, and they had no clue it wasn't made from wheat.

[GF-Caryl]

I too had my gastroenterologist come into the recovery room after my edoscopy/colonoscopy and tell me he didn't see anything that looked like I would have Celiac. But groggy as I was, I told him "I don't care I am going gluten free from this minute forward". One week later he called with the results. He left the message on my voice mail that said "the results are consistant with Celiac".

I did not have really awful symptoms - just enough to make me suspicious as my brother has Celiac and my grandfather did also. Then I got diagnosed with osteopenia, and it clicked. I KNEW I had Celiac, and I basically told the doctor and asked for the test. He tried to tell me it could be other things, but I wasn't hearing any of that. It IS overwhelming at first to learn so much about the foods, personal care products, kitchen utencils and everything else about this, but as I have been gluten free for over two years now, the mild, odd symptoms that I never associated with Celiac (tiredness, brain fog) and the few gastro symptoms: a little bloatedness and gas that I associated with all the diet sodas I was drinking, cleared up and I feel great.

I have also found so many wonderful gluten-free food products and main stream foods that are gluten-free, that now the smell of things like fast food burgers and regular pizzas make me gag, not because of the gluten -but because of the grease!!

You can do this and this forum is the greatest tool for learning! You will enjoy feeling good again and not having to deal with constant trips to the bathroom - it's all so worth going gluten-free despite the big learning curve.

[ByeByeBagles]

Thanks everyone so much. I KNOW it takes longer than 2 days, but I am just so desperate, and last night I felt as though I had hit an all time low...With the combination of sleep and all your encouraging responses, I am feeling better today. Thanks so much for understanding