New, Stressed, And Confused

[CurlyCyn83]

Howdy!

For 2 1/2 years I've been suffering with bloating, diarrhea, sharp stomach pains, fatigue, joint pain, headaches, memory loss, acid reflux, heartburn, muscle aches, no energy, always hungry, moodiness, weight gain, and the list keeps going.

First the doctor said lactose intolerance... then GERD... then said "maybe you have an ulcer". In January 2011, I left my doctors office crying because he could not explain any of my symptoms. The next day I found a new doctor and on my initial meeting with him, he said that he wanted me to go on a dairy free diet for 6 weeks and report back. He also ran blood work and said he'd test for Celiac Disease.

I was tested for Tissue Transglutaminase. For Kaiser, their website shows the standard range is <.90 for both IgA and IgG. My IgA was reported at 3.63, while my IgG .63.

Being concerned and confused I called to get clarification on these results and since my doctor was on a vacation, the on-call doctor said that I probably had Celiac Disease and would refer me to the Gastroenerology department.

A few weeks later I had an Upper Endoscopy performed and before the procedure was told that all my symptoms were most likely due to stress! My biopsies came back normal, yet I was told go on a Gluten Free diet for 4-6 weeks.

I haven't been successful staying gluten free for more than 5 days at a time. When I am Gluten-Free, I feel great and feel my old happy self coming back to surface and feel my symptoms slowly diminishing. But with my mother dismissing any thought to having Celiac Disease, as she thinks it's all in my head. I have no support. My boyfriend is trying the best he can, but he didn't even know what gluten was until I told him. And as for Kaiser and the doctors, I don't think they are well educated on this topic and won't give me a diagnosis.

I'm left confused and not really sure what to think. I know I need to fully accept this in order for me to live gluten free for the rest of my life. I'm about to be 28 and I would love to be healthy and have everything under control by my 30th birthday. But I feel I cannot accept it until I hear it out of my doctors mouth. Any one else in a similar situation?

Thank you for taking the time to read my story.

[AMom2010]

My celiac panel was negative, but after researching the topics on this board I am still convinced my issues are due to eating gluten. I have been gluten-free for nearly 4 weeks and the joint pain and fatigue are gone. I am so encouraged to keep going and am very hopeful my other issues will resolve after being on the diet longer. I had an MRI last fall and had a couple of lesions, scary stuff. We are talking brain damage, that's enough for me to give this diet a serious chance. I can honestly say I have not ever been tempted (it's only been 4 weeks remind you) because I truly believe gluten-free is the answer and I am not willing to put my long term health on the line for a cookie. I would say educate yourself on the topic and if you begin to believe it sticking to the diet will be a cinch.

[SarahJimMarcy]

I tested negative for celiac, yet over a decade's worth of stomach problems are gone now that I've gone gluten free. My family keeps pushing bread on me ("The Italians have been eating bread for hundreds of years and they're healthy") but I just say that I feel much better now that I am gluten free. It's strange but I find that most people will support you feeling better, if not a specific diagnosis.

[krystynycole]

My blood work came back negative and I had a colonoscopy for other reasons shortly before that was "perfect" according to the doctor. Though going gluten-free I feel like I have my life back! I would not go back to eating gluten-free for anything.Healing can take a long time depending on how long and how serve your symptoms are. Just keep in mind no two people are the exact same with this. I actually stopped going to my GI because my primary care doctor knew more about gluten sensitive/intolerance and was a better resource than my GI. A lot is not really known/researched on non-celiac/gluten sensitivity which makes people like us hard to diagnosis.

I do not feel like I need a doctor to confirm what I already feel. Not eating gluten makes all the bad symptoms go away so I don't eat gluten...end of story. I don't need a professional to tell me how to make me happy or live my life--I'm just glad I finally figured it all out!

[CurlyCyn83]

Thank you for your comments. It's comforting to know I'm not the only one out there. I'm so thankful to have found this website.

If it's common to get a false negative on your blood work, it sounds like the health care industry needs to test differently so the test can be accurate without having to put someone through an endoscopy, because I did not like having to go through that procedure and it was expensive.

Happy Wednesday!

[pricklypear1971]

Howdy!

For 2 1/2 years I've been suffering with bloating, diarrhea, sharp stomach pains, fatigue, joint pain, headaches, memory loss, acid reflux, heartburn, muscle aches, no energy, always hungry, moodiness, weight gain, and the list keeps going.

First the doctor said lactose intolerance... then GERD... then said "maybe you have an ulcer". In January 2011, I left my doctors office crying because he could not explain any of my symptoms. The next day I found a new doctor and on my initial meeting with him, he said that he wanted me to go on a dairy free diet for 6 weeks and report back. He also ran blood work and said he'd test for Celiac Disease.

I was tested for Tissue Transglutaminase. For Kaiser, their website shows the standard range is <.90 for both IgA and IgG. My IgA was reported at 3.63, while my IgG .63.

Being concerned and confused I called to get clarification on these results and since my doctor was on a vacation, the on-call doctor said that I probably had Celiac Disease and would refer me to the Gastroenerology department.

A few weeks later I had an Upper Endoscopy performed and before the procedure was told that all my symptoms were most likely due to stress! My biopsies came back normal, yet I was told go on a Gluten Free diet for 4-6 weeks.

I haven't been successful staying gluten free for more than 5 days at a time. When I am Gluten-Free, I feel great and feel my old happy self coming back to surface and feel my symptoms slowly diminishing. But with my mother dismissing any thought to having Celiac Disease, as she thinks it's all in my head. I have no support. My boyfriend is trying the best he can, but he didn't even know what gluten was until I told him. And as for Kaiser and the doctors, I don't think they are well educated on this topic and won't give me a diagnosis.

I'm left confused and not really sure what to think. I know I need to fully accept this in order for me to live gluten free for the rest of my life. I'm about to be 28 and I would love to be healthy and have everything under control by my 30th birthday. But I feel I cannot accept it until I hear it out of my doctors mouth. Any one else in a similar situation?

Thank you for taking the time to read my story.

From my perspective you have the best and clearest diagnosis available from an MD without undergoing an additional biopsy. Your disease may be early; therefore the damage to your intestines are patchy or just not there, or they didn't take enough samples.

You have the positive bloodwork, you feel better without eating gluten. Be happy they DIDN'T find damage... that may mean your are not far along in the disease and have less recovery.

You may pursue other testing, such as stool testing from Enterolab or genetic testing to look for Celiac markers.

You will have to teach yourself about Celiac. Most doctors are not knowledgeable. Look for a Celiac support group/society in your area.

[Skylark]

Why are you giving your doctor such power? YOU are the one with the power to make yourself well, not him. You have a great answer about celiac. You have positive bloodwork AND you feel better off gluten. Biopsies can miss damage, or it's not there yet because you're latent celiac. Either way, tell your boyfriend and your mother that you're going gluten-free for good because celiac or not, it makes you ill and you are at very high risk of eventually developing a positive biopsy if you continue to eat it. When they see your old happy self back, they will realize you were right.

[Takala]

If you have the opportunity to switch health insurance out of Kaiser and into a PPO, do it. It is not that they are not "well educated" on the topic, it is that their system is designed to discourage you to seek the use of their services, because that costs them money, and they do this by deliberately telling patients that their symptoms are "all in their heads" or ignoring test results or refusing to schedule appointments and followups. By being nasty to their patients, they can get anyone they think could have a chronic condition to self - cull out of their system, and then they can pad their statistics as "we have a high success rate because the ones in our system are healthier."

You will not get them to diagnose you properly. I think that some of them are actually borderline criminal in behaviors, in that they repeatedly and maliciously will tell the patient "all in your head, stress, fibro," ect, because they know there is no accountability. Because this is a disease which affects brain function and emotions because of malnutrition.

I don't know why you think you need to be told by an authority figure that "this is your disease, now deal with it" other than we as a culture are still pretty much brainwashed into thinking that surely an HMO doctor would not act in this manner.... guess again.

It is not unusual to have a negative biopsy, they have to take a lot of samples. The "gold standard" for official diagnosis tends to be in the USA positive bloodwork and biopsy results. This is why I said you won't get them to diagnose you... they won't want to do a repeat biopsy.

Now, let's deal with this.

You have symptoms and some positive bloodwork, and you respond to a trial diet. You are highly likely at least gluten intolerant. Welcome.

You can get over the counter testing for genetics and to see if you are a carrier for the genes pre disposing you to celiac or gluten intolerance and to see if you have the gluten antibodies, if that will make you feel more motivated.

You will just have to work around the annoying relatives and parents.

You seem to have trouble sticking to the diet.... the disease can mess with how you perceive hunger. This means you need to take gluten free B complex vitamins, multivitamin, calcium, D, and magnesium. This will help kill the cravings. You may also need to eat more like a guy than a girl, in that you eat higher protein and less carbohydrate, and higher fat, so you don't sugar and carb binge and crash repeatedly. Low fat dieting is not your friend on this.

Instead of thinking "wow, this sucks, this is the rest of my life," try to think in terms of living in the moment, as "Because I am going to eat this luscious homemade gluten free chef salad for lunch, with fresh bread I just made and fruit for dessert, I'm going to feel better all afternoon and do what I want, instead of feeling sick." Or, if you're not into the salads, go for the meat and the potatoes and the vegetables. Do not try to subsist on cereal and rice cakes, that does not work.

Always keep plenty of gluten free snacks around, and take some with you when you go somewhere, so you won't be tempted to grab the wrong thing. As for socializing, use google to research options in dining out - google "gluten free name of your town restaurant " or "gluten free name of town health food store," to find local options. Depending on where you live, you may be able to find places that can serve you gluten free that you did not expect to see.

You are so young, you can probably avoid many of the worse side effects of untreated celiac/gluten intolerance, and have a life... go for it !

[Sam'sMom]

Hi - My son was newly diagnosed only through a very high positive on the blood work, but not a biopsy. Anyway, someone recently gave me the website for the University of Chicago Celiac Disease Center and hotline. I found reading their material very helpful and hope to talk to them soon. It is celiacdisease.net. I am quickly finding that my Dr's office, which I have always respected, is not very educated either. I'm thinking about offering them an in-service:-)

Good luck and trust yourself and your intuition.