New Here And Having A Melt Down At The Moment. Sorry This Is So Long...

[Virginiann]

Hi all, this is my first post. I've been lurking for a few weeks now. I am self diagnosed after many months of being very sick and two hospitalizations. I was on my way to becoming a nurse and was in school full time up until last August. After a battery of tests as you all know very well, searching the Internet for any ideas and help I could find I stumbled onto Celiac. My mother has been diagnosed with IBS and all by herself she knows she can not eat wheat. So I kept calling her and asking what she could and could not eat and I decided I had the same issues. Once I found Celiac I called my doctor asked her to order the blood work (I had an endoscopy last Aug and it was neg). My blood work came back unremarkable as well. After reading many posts I decided to try the Gluten Free diet and lo and behold, I have been feeling better. My stomach is was no longer hurting and I was actually starting to think I was on the road to recovery. It's only been a month. Tonight I had to leave work early due to 4 trips to the bathroom in 30 mins. My stomach is hurting again and I feel horrible. Since I have been home tonight I've made several trips to the bathroom. I can not even imagine what I could have eaten to cause this... I'm sick of it, I'm angry, and I'm hungry. My GI doc refused to believe that I have gluten sensitivity due to the neg results. My PCP whom I absolutely love, told me it will take at least 3 months for the protein to leave my system. I sure hope one of you could cheer me up tonight! I downloaded the software from this site and I have read a ton of stuff, any advice from anyone would greatly appreciate it!

God Bless,

Virginia Cooper

[psawyer]

Welcome. We are here to offer support.

After being diagnosed, it took several months of being gluten free before things became "normal". Recovery time depends on how old you are and how much damage has been done. I was 46, and had been sick for years, with progressively more severe symptoms for five years prior to diagnosis. I began to see improvement within a month, but it was five or six months before noticeable symptoms disappeared. Your results will differ, but it can take time.

During the recovery period, you may find it necessary to avoid certain foods which do not have gluten, but can irritate the damaged intestines. Lactose is a common one. Foods which are high in fat content, or are spicy, can also be problematic during the time that your villi are healing.

Stay off the gluten, and be patient. Things will get better.

[Guest nini]

it took a good six months for me to feel much better after my dx... give it time, also, beware of hidden glutens, they are everywhere. Read labels all the time. Ingredients change. Don't rely on lists, lists are a good starting point, but always read the labels and then decide for yourself. Get familiar with all the places gluten can hide (shampoos, soaps, lipsticks, chapsticks, medicines, sauces, flavorings, cross contamination, shared toasters, shared kitchens, on and on... take neccesarry steps to protect yourself) even with extreme vigilance, accidents can and will happen, so be patient with yourself.

In my opinion, your positive dietary response is a valid diagnostic tool, you know your body best, and as far as Dr.s that don't support you (your GI) find another one! Stick with your PCP that seems to be supportive...

it will get better.

[jerseyangel]

I agree with everything Nini and Pater said. In my case, I had been sick for 20 years--my symptoms became severe in the 2 years proir to diagnosis. The D subsided within a week or two, initally. But for the first 3 months or so, I still had more bad days than good. Around the 4th. month, I began to feel like I'd turned a corner. Even now, at 8 months, I still have issues with fatigue, indigestion and additional food sensitivites. It really does take time, but you will get there. I will repeat the advice about the 'hidden glutens'--make sure that your personal products are safe and go through your kitchen--wooden utensils, collander, toaster--all need to be used only for gluten-free foods. Be diligent about crumbs, on the counter, and in the silverware drawer! If you need any specific tips or info. feel free to ask

[Rusla]

You may also have to wipe down your desk at work or any equipement if shared with others. I kept getting sick and my DH would crop up within hours from crumbs on the desk that I didn't know were there. So to avoid having that problem again, I put on my vinyl gloves and wipe everything down on the desk I am using; mouse, keyboard, telephone, everything. I have not had a problem at work since doing that.

Also every once in a while I have a run of the big D but I have only been gluten-free two months. I know it will take quite awhile before things fall into place but my symptoms got increasingly worse over the last 8 years. The last two were phenominally horrible with the big D and DH all over my face, pains etc. It is so nice not to have a face that makes me feel like a leper and spend my time hanging out in washrooms. Before when I ate I knew I had to be at a washroom in ten minutes or less. It is nice not to live with the "will I make it to a washroom in time" fear.

We all understand what you are going through here. I think of it as there is tons of years of gluten built up in my body it will take awhile to get it all out.

[Virginiann]

Wow, thank you all so much. I was up until way past midnight searching all the ingredients of all my meds. All claim to be gluten free. My stomach hurt so much (something that had stopped a week or so ago) I was so confused and depressed I had insomnia something fierce last night. I really have not been as diligent as you all talk about because of the fact that I was not dx officially and it is hard for me to understand cross contamination. I've read a lot about it but I guess I am in denial. I also have not changed any external products I use. I have checked into them, but I have not changed anything. With my next paycheck (next Wed) I will go through all that stuff and get gluten-free stuff.

I failed to mention that the reason my GI dismissed the whole Gluten subject is because I had been gaining weight! It was through my research that I discovered that the same amount if not more people who have a gluten intolerance gain. I have never been this heavy. Also I had a thyroidectomy in 2001 and for the past eight months or so we (my PCP and I) can not seem to get my TSH under control. So as you can see I have a lot going on in my body. It is easy to have frequent pity parties.

I also failed to mention, I am 48 years young and I have a wonderful husband who supports me 100%, he has been away helping his parents up north for 3 days and yesterday I started missing him terribly, especially while I wasn't feeling well, he is always here for me to lean on, so my support system was not in place last night while I was hurting so bad. My stomach still hurts this morning.

I stumbled onto the book Dangerous Grains before I heard it mention here on these boards, it was the ONLY book at my local Barns and Nobles store. How's that for divine intervention?

Well this is getting way too long, thank you all again for your encouraging words.

Virginia

[Guest nini]

Virginia, I was extremely overweight before my dx, since going gluten-free almost 3 years ago, I have lost over 100 pounds! We are NOT all skinny minnies with bloated bellies!

[ianm]

I was another of the super heavyweight celiacs also.

[psawyer]

I was the opposite. I dropped weight from around 190 lbs to just under 130 at time of diagnosis. I was wasting away from malabsorption. Since going gluten-free I have worked my way back up to and a little beyond my "ideal" body weight. The doctor says I should weigh about 195, but I currently am 204. A gluten-free diet tends to be higher in fat than a "normal" diet. At least, that's my story and I'm sticking to it.