Long Road And Still No Definate Answers!:(

[JenniferH]

For the past 10 years I have suffered from asthma, Hypoglycemia, anemia, not digesting fats, lactose intolerant, swollen neck lymphs, nerve disfunction, etc. The on going lack of fat digestion/etc lead to chronic pancreaitis which ended up with a large pancreatic tail tumor crushing my splene. Ok, after the distal-pancreatomy and splenectomy I still can't digest fats/ low blood sugar and iron are better but still a problem. I had a colonoscopy which was fine. I've been having abdomen ct scans every six months for swollen small intestine lymph nodes. The last report showed no new growth and while it could be lymphoma they feel optimistic because all the lymphs haven't grown in 10 months..(Lets wait until it spreads and is uncontrollable before we try to do something.) I'm a bit sarcastic right now. Anyway, the swollen lymphs weren't on my pre-surgery cat scan, but showed up 6 months after surgery (and are still there). Anyway, a year after Prevaid treatment I had an endoscopy. Findings were Gerd, Gastritis, inflammation of the stomach and upper small intestine, old stomach blood, etc. The biopsy for gluten sensitivity said, "suggestive possible gluten sensity." They ran blood tests which came back normal.

I gave up pasta, pancakes, muffin on occasion a year ago because I swelled up and felt completely weighted down. Pizza gives me diahrea. I thought it was just fat. My husband is certain that I have gluten sensitivity if not full blown celiac. Celiac disease would explain all my problems so I'm going to try the gluten challenge and see how I feel. I've given up meats and a lot of carbs becuase of fats, I can give up the rest of wheat products. (Ok that was a pep talk:)

Anyway, my fustration is the fact that my GI nurse finally called me back last night to say the blood work was normal. I asked her if a light to non-gluten diet would effect the results and she said NO. Okay, everything I've heard says to be glutened up before those tests. That was strike one against her. I asked her about all the inflammation and the biopsy. She said remain on the Prevaid for awhile, I reminded her that I've been on it for over a year now and they still showed "lots of inflammation".. she said well just think of how worse you would have been without it. STRIKE TWO! I asked her again about the biopsy and she said it was only suggestive, not 100%. So, her bottom line was for me to remain on the Prevacid and schedule an appt for 3 months to visit with the doctor.

I'm tired, fed up and really, I don't want them to continue cutting out organs that have gone bad because I can't digest fats. I have 3 children and can't afford to pass out from dizzy spells from lack of oxygen, low iron or low sugar. I've been fighting this blindly for 10 years now and frankly I'm sick of doctors. Sorry I'm so irritated, I just really am tired of it all.

[queenofhearts]

Jennifer, I think you have discovered the cause of your misery, & whether the medicos agree is not really the point. Search this site & you'll find hundreds of testimonials on the subject of clueless doctors. You have the choice to pursue a completely gluten-free diet with no-one's permission, & if it makes you feel well, you'll have your answer. It's great that your husband is on your side about this, because the one disadvantage to going on the diet undiagnosed is that sometimes family members undermine you. You won't have that problem, so JUST DO IT! Forget the uneducated doctors. I know it's hard but when you heal without their help you'll have the last laugh. And maybe just maybe they'll learn something. (There have been a few stories on this site of docs who were converted by the empirical evidence!)

For lots of helpful info, Nini's Newbie Kit:

Open Original Shared Link

For some truly inspirational stories of healing:

Open Original Shared Link

And of course, come to this board with any questions or just to vent!

Leah

[IrishKelly]

I AGREE WITH HER ADIVE 100%!! Just try the diet because a very well known actual GI dr. in my area mis-diagnosed me as just having an "abnormal digestive system", when in fact my new holistic dr. figured out immediately that i'm glutent intolerable...so much for those medical classes thay were trained in like robots!!

[Ursa Major]

I am another one here with undiagnosed celiac disease all my life, because the doctors were clueless. I diagnosed myself last October (and my doctor actually agrees with me now) and had immediate positive results going off gluten. I say, "JUST DO IT!" Who cares what the dumb doctors and nurses say. Listen to your smart husband and to your body. I hope you feel better soon! And don't give up if you don't immediately feel better, it sounds like you have a lot to overcome, it may take a while.

[jerseyangel]

Hi Jennifer, and welcome

You have been through so much--why put your self through any more pain and misery by listening to medical "professionals" who want you to become even sicker before they will deem you Celiac?

You need no one's permission to go completely gluten free. My advice is to do just that. It's not an overnight fix, but you will put yourself on the road to healing.

Any questions, anything we can do--we're here to help!

[rutland]

Hi Jennifer, I too have not been diagnosed and I know that I probably wont be by doctors since Ive been gluten free for a month and plan on staying on it indefinatly. They really cant diagnose you unless your been on gluten while the tests are being done and who wants to go through that agony. It sounds to me that this is a blessing for you to have a direction to move in with starting a new lifestyle that is likely to lead you to stronger, more vibrant health. Change and growth can be painful but if you stay true to yourself and trust in your own intuition you will see yourself though this rough time.

The anemia your talking about is common in celiacs, iron, as well as calcium, Vit. K, B12, folic acid and probably many other vitamins dont get properly absorbed in undiagnosed celiacs due to the damage of the villi. As you stay on the diet your likely to find youself getting stronger as your intestines heal and more nutrients get absorbed.

Stay strong! Leah is right. You dont have to wait for any doctors OK to do the diet. You know inside what is good for you. Your husband sounds like a wonderful support, that is another blessing for you.

Steph

[KaitiUSA]

Sorry to hear everything that you have been through. I can relate to the being sick and not knowing whats going on. If you need someone to talk to I am always here:)