Not Happy With Blood Test Results

[SLB5757]

I am really beginning to think that I am going to end up dying and no one will have listened to me over the past four years when I tell them I have pain every day all day. My quality of life has went down so much in the last four years and I really do not even want to live this way. I of course go one because I have two beautiful children, but I do not think anyone could live in constant pain every day. I am tired of hearing it is IBS....because IBS wouldn't make me unfunctionable - would it?

I would swear it is celiac, but my tests do not ever come back as positive. I really think I am one of the individuals who is falling between the cracks here, but how will I ever know?

I have had the bloodwork done two times now. The first time I had what seemed like a full panel and all was OK. This last time the doctor only ran Gliadin IgG, and TTG Iga. I was told that the Gliadin IgG was 1.1 with <10 being negative, and the TTG IgA was a .8 with <4 being negative. Obviouslly my numbers are extremely low, so I assume that it is a 100 percent positive that I am not celiac.

At the same time the Allergist took IGE RASTS for Wheat, Rye, Barley, and Oats. They were all positive for allergy, but when I got the results they seemed fairly low positives which in my head doesn't mean that I have a true allergy to the foods. Wheat was a 1.50 class II, Oat was a .66 Class I, Rye was a 2.05 Class II, and Barley was a 2.19 class II. From what I google search you can have a positive Rast of even up to 100....so obviouslly my allergy isn't that high. I would think that because I have outside allergies my grains may even show up positive because of that alone.

I don't know what to think anymore I just know I am tired of having daily symptoms that are all gastro-intestinal and a little bit emotional. I am grumpy and crazed at times because I am tired and frustrated with being sick daily. My tummy bloats constantly, I belch all day, I fill up with gas, my tummy acts like it is eating itself from the inside out and is always grumbling, I have constipation, and I get this high left-sided pain a few hours after eating sometimes. My stomach never has a chill moment.

I felt better yesterday after a weekend of cooking at home eating things like turkey burgers without any bun, plain potatoes, rice with butter and salt, cooked corn, broccoli. I tried to only eat things that were whole foods and no grains at all besides the rice and corn. I truly did feel better. Last night I ate taco bell and I feel horrible this morning/today and I feel like I am going to fall asleep at my desk. I only ate a tostada with bean and cheese, a cruncky taco with only meat and cheese, and a little bit of rice. It was only meat, corn, and cheese....so why does it have my stomach in such upheaval today????

I know this is a long long rant - but I am hoping that maybe someone has been in my place before and can shed some light. I have thought Celiac, an Ulcer, Cancer....I really have no clue - I just know I feel terrible all the time and it's impairing my functionality. I have an appointment with the gastro Dec. 8th, but this is the guy that wouldn't run any tests at all because he felt it was IBS (even though I don't get any cramping or any of those kinds of issues...the docs look at me and say here is a 107 lb.s girl, she is healthy looking....it must just be IBS).

[TrillumHunter]

Have you give the gluten-free diet a try to see if it helps? If it does, you've got your answer. You don't need anyone's permission to eat gluten-free. It doesn't require a diagnosis. Lots of folks on this board have discovered that is what is best for them and they just do it! You can do this, too!

It is possible to have intestinal damage consistent with celiac and not test positive on traditional blood work. I would think you would have to go to one of the major celiac centers to get this diagnosis.

Whatever path you take, don't give up! You can do this. Your quality of life can improve, but you will have to make the final decision on how that is to happen.

Hang in there--you are worth fighting for!

[SLB5757]

Thanks for your response. I am just at my wits end after four years of this. I have always had tummy issues but they really got severe after my third child was born. I had a stillbirth, then my 10 year old daughter - and after my four year old was born I started having these symptoms. I had about 6 weeks if diah. and lost 10 lbs and was down to 92 lbs. That stabilized, and I have just had off and on pain since then. The main symptom being the bloating and gas build up/belching. I take Nexium to no avail. I had a endoscopy in 2006, but that was after about a month of eating literally nothing because I had been so sick. It just showed inflamation and some cell changes or something. They didn't specifically test for celiac, took two biopsies, and said I probably had acid reflux. After that I had a gastric emptying scan, a Hidaa scan, and all was fine and normal. This was all back in 2006, and I was told I have IBS. Three years later there is still pain. I know people are tired of hearing me complain, and I hear " you have to do somethingabout it and not just complain", but I have been through a battery of tests to no avail, and keep seeing doctors who act as though I must be nuts and tell me it is IBS.

As far as the gluten free. I seem to feel better - but I can't say it's because of gluten-free diet. I was better this weekend at home when I cooked whole foods only and ate no bread. I only had an episode last night and this morning after eating taco bell, but I do not think the food I had was terribly bad or that it even contained gluten.

It is just discouraging when I am trying as hard as I can to do whatever at all costs to feel better. If it is a gluten-free diet - great! If i is something else...I wish someone would just tell me so could move on and take steps nescessary to get this thing taken care of. I am tired of doctors, tired of being sick, and I want my life back.

[twe0708]

You need to try a gluten free diet for at least three weeks to see how you feel. Taco Bell is not recommended.

[SLB5757]

I will try the Gluten-Free diet again, and try and be very strict - meaning basically only items I cook or get from our local health food store that specifically say Gluten-Free on them. I am a fats food girl, so that is where I go wrong alot of times. I work, take classes, and have a 4 and 10 year old. After 5:00 if I am in a rush I stop and get the kiddies food, and I will try and order something as well. There seems to be no safe " fast food". I ate at Wendy's yesterday for lunch and they gave me fries instead of the baked potato I ordered. I ate the fries anyhow because I had no time to return to the restaurant. Maybe the taco bell/Wendys combo did me in? The fries aren't actually made with wheat - they can only touch other items in the frier. It didn't seem possible to me to really get sick from such a miniscule amount of gluten/wheat ingredients. Just like the taco bell I had...the levels had to have been very small; I didn't eat bread or anything like that. I will try my best to cook at home and bring it to work for lunch and maybe have something prepared in the car for when I take the kids through the drive through. That way I know I am not getting cross contamination somewhere. All I can do is try it and see I guess...what else do I have to lose.