kellerg2

I am actually still not officially diagnosed. My biopsy showed signs of the start of Celiacs and blood work normal. CT Scan done after was normal. Changing my diet has made me feel so much better so I am convinced that i have Celiacs but still not proven by the doctors. I have a follow up next week to figure out what to do next but in my eyes I have Celiacs even though the tests say otherwise.

My theory is that I went in to see a specialist literally weeks after my symptoms started and as a result it won't show as positive yet in blood work or on biopsy.

I just recently started my gluten free diet about a week and a half ago. I have still been having some slight pain in my sides and some general cramps in my stomach towards the end of the day at work. Last night I looked at the label on my hair gel now that i am learning more about my new lifestyle and noticed that there is definitely a wheat product in the gel. Is it possible that this could be whats causing my pains?

  On 2/15/2011 at 7:40 PM, mushroom said:

Celiac in its early stages presents with inflammation in the duodenum/small intestine, maybe something odd with eosinophils - there are several changes that while not specifically diagnostic of celiac are indicative that that process is starting. That's probably what your results showed. (By the way, it is always a good idea to get copies of your test results for your own records, for this reason and also so you can present them to any other doctor you see.) So even though the blood tests did not confirm, this wise man thought that if you tried the diet and improved his hunch would probably be correct. Not enough doctors listen to their hunches and instincts Glad you are starting to feel better.

Yes, it is normal to suddenly start feeling hungry. So many report feeling absolutely ravenous. Celiac is a disease of malabsorption so there are nutrients your body is just crying out for that it has not been getting, so it is saying, MORE, MORE, MORE!!! Might be a good idea to ask the doc to check for nutrient deficiencies like B12, D, iron, etc., that way you could supplement and not gain a lot of weight (unless you want to!). ( Also, without all that bloating, there is more room in the stomach to fit food and that will make you hungrier.)

Wow thanks so much to everyone for the advice and info. I cannot tell you how much better I feel since I have joined this forum.

APOLOGIZE IN ADVANCE FOR ALL MY QUESTIONS!!! Also is it normal to always feel hungry when you start going gluten free? I feel like i have switched from constantly feeling full and bloated to always feeling hungry.

  On 2/15/2011 at 5:17 PM, SaraKat said:

Oh, that makes sense! That was kind of like me, but in reverse! I kept having this really awful pain in my left ribcage. No one ever tested me for celiac in the beginning, but I did get a CT scan. Finally a few months later I was tested for celiac and it was positive!

What are your main symptoms?

Bloated after eating half a plate of food sometimes, cramps across stomach region, pain in left rib cage!!!! that's it....very mild based on what I am hearing from others on this board..THANK GOD! They actually thought it was an ulcer which was what led to the endoscopy. Primary Care physician thought Gastritis or IBS.

  On 2/15/2011 at 4:07 PM, SaraKat said:

Why would he want you to have a CT scan? I didn't think that showed celiac? I had a CT scan before I got diagnosed for unexplained pain I was having and it came back normal- I had the endoscopy about 4 months later that was pretty advanced celiac.

I am glad the diet is making you feel better!

The CT scan would be to rule out anything else....which like I said Im still not sure what the anything else could be since all my blood work is normal. I figure I give the diet a try and see what happens. I just don't get why after the endoscopy he ordered blood work specifically for celiacs. Obviously something in that biopsy pointed towards Celiacs even though it was deemed "inconclusive"

Well my doctor actually wanted me to get a CT Scan but I told him I wanted to go gluten free and see if that did the trick. I didn't really see a need to get shot up with radiation for I'm not sure what. I'm 34 yrs old, very healthy, and all my blood work and endoscopy were normal....aside from the start of what he thought could be celiacs.

At any rate I'm 4 days in now and can feel a difference already. Still have stomach cramps but to a much lesser degree already.

I was recently told that my biopsy showed signs of celiacs in its early stages and the dr wanted to do a blood test to confirm. My blood test came back negative. I have already decided to go gluten free to see if my body reacts. I read something today though that the biopsy and blood test are really only reliable on a fully atrophied (sp?) villi.

If I do have Celiacs I can pinpoint when it came on and that was less than 3 months ago after a virus I had. Does anyone out there know if there is any truth to the fact that in its earliest stages it is very possible for negative test results? Also, what would be seen on the biopsy that would lead him to order further tests?

I have a follow up on March 1 and plan on asking my Dr these questions but would love to hear some other opinions.

thanks in advance.

  On 2/11/2011 at 6:20 PM, Kimbalou said:

Just go ahead and stay gluten free. Sounds like you should, considering the biopsy results. It can take a long time to feel better. I was diagnosed in Nov and I still have stomach problems. I am very sensitive to everything I eat...spices, veggies, etc.

You are doing the best thing for your body. Welcome to this board. i'm sure you will find a lot of help here. And it's a great place to vent.

Thanks. I already feel better just knowing there's a place I can get some advice from some others going through the same thing I am. If I hear that it's probably all in my head one more time I am gonna go nuts

I have been having stomach problems for about 3 months now. It came on suddenly and seems to get worse at times throughout the days and fine at nights. I was originally placed on Omeprozel and that seemed to help the symptoms some but they never went away. I then was referred to a GI and he performed an Endoscopy that came back inconclusive but showed "what might be the start of Celiac Sprue". Blood work was all normal. I started going gluten free about a week ago and can tell a difference without question but still have some cramps in my stomach throughout times during the day. Dr wanted me to go get a CT scan and I convinced him that i would like to continue to go gluten free for a month till our next appt and see if that works. Has anyone ever had "inconclusive" biopsy and negative blood? This has been so frustrating to me because people think its all in my head and the dr doesn't seem to have any idea whats going on. Any advice or information would be greatly appreciated. Thanks.