Awaiting Test Results, Lots Of Questions

[julirama723]

Hello all, I am new to the board. I've been reading lots of posts in the Pre-diagnosis forum over the past couple of days. My mother became ill this summer while they were vacationing and was rushed to the ER just last week, almost at renal failure, anemic, severe hypothyroid, had lost 40 pounds in 2 months, etc. On Monday the diagnosis was confirmed, she is celiac. She said the disease is genetic, so I had blood drawn this week to be tested for it, and I'm still awaiting my test results.

Here is my story and how this all fits together: 2 years ago, I was morbidly obese, slowly nearing 300 pounds, and absolutely miserable. I realized that I had a serious problem with carbs (like cookies, chips, pizza, etc. the "typical" American diet) and was not eating vegetables at all, unless you counted ketchup. I went on Atkins (and followed the plan correctly, eating lots of veggies, moving up the rungs slowly, re-introducing a couple of new foods each week) and began losing weight, feeling better, and looking younger. I was grain-free for 8 months or so, then slowly reintroduced them when I reached rung 9 (whole grains). I don't remember any sort of sudden reaction, but looking back, I realize it was a cumulative effect. My weight loss stopped dramatically at this point. I assumed it was because I was very close to my goal weight. I began having lots of bloating, gas, and digestive discomfort, though I wasn't sure what it was, or perhaps I didn't want to believe it was wheat-related. I was more concerned with foods causing cravings.

In the past year, my weight had been relatively stable, but as of the past 7 months has been increasing again. My symptoms have worsened and multiplied. I have abdominal discomfort, abdominal bloating, gas, constipation (someone posted that they "go" but it never seems like they get it all out--that's exactly how I feel), fatigue, I bruise easily, I suffer from random and inexplicable mini-bouts of depression that last a week or so, menstrual irregularities, and I also have a history of Graves Disease. I had been doing internet sleuthing when this started, and celiac came up as a possibility, but I dismissed it because I wasn't thin and I wasn't losing weight. (Now I know that this is somewhat of a stereotype, not all sufferers exhibit those symptoms.) My "weight" that I've gained is basically all in my tummy, and my body shape has changed, I don't look like the same person.

So here I am 20 pounds heavier than my lowest adult weight, tired, fat, and fed up. I was tested on Tuesday and I'm still waiting for results. Here are some questions I have, and I apologize if these have been asked a multitude of times already. I realize that you're not doctors, but any opinions and advice would be greatly appreciated!

If the blood tests come back positive, do I really need to get an endoscopy?

If they come back negative should I get tested again?

Is celiac disease a likely diagnosis, based on my symptoms?

Is there any benefit to having an "official" diagnosis rather than just going gluten-free?

Is there detriment to having an official diagnosis?

Thank you for your time!

[ShayFL]

If I were you, I would go back to grain free and feel GREAT again!! I am grain free and have never felt better in many ways. I didnt have a weight problem (I was too skinny) but the grains just dont agree with me. They spike my blood sugar. Grains are not the "health food" that the U.S. makes them out to be. Our bodies are not designed to digest them well. We just force our bodies to do it. And you had AWESOME results before. Grain free sounds right for your body.

If the blood tests come back positive, do I really need to get an endoscopy? You dont NEED to do anything but get well. But if having an official Dx will keep you on the diet 100%, then I would say YES get the biopsy. If you dont need a piece of paper to keep you 100% gluten-free and no cheating, then you can choose to skip it.

If they come back negative should I get tested again? There are many FALSE NEGs. You could still ask for a biopsy to see if your villi are damaged. Or just do the diet and feel GOOD.

Is celiac disease a likely diagnosis, based on my symptoms? YES

Is there any benefit to having an "official" diagnosis rather than just going gluten-free? Depends on the type of person you are. Some people MUST have an official Dx or they "cheat". And if you are truly Celiac, then "cheating" causes damage and autoimmune response (you dont want that).

Is there detriment to having an official diagnosis? Could be used against you for future insurance (pre-existing condition)

[ChristinaEve]

If you feel good without grains then I would cut them out completely. If your are the type of person who needs an official diagnosis to remain gluten-free then a biopsy may be a good idea. I never had one done. I was told to start the gluten-free diet and see how I feel being I didn't want the biopsy and I feel great.

Being completely gluten-free is a HUGE commitment. It is time consuming and can feel like your lonely and left out, especially when it comes to eating out. I think that it took me 6-8 months to get the diet down completely and I have a degree in dietetics (and internship away from becoming a registered dietitian). I still have slip-ups and get sick for days.

[mftnchn]

I think I would go for the biopsy option if I had the chance. With celiac, other conditions can occur due to the auto immune problems. You have a significant amount of symptoms. It would give you a baseline, in case further problems develop or the problems don't all resolve.

In terms of diagnosis, it is the gold standard. However, you have a clear response to diet that is grain free and you have a confirmed celiac first degree relative. So the likelihood of celiac disease is high.

I also gained weight from gluten...and have lost most of it now since being gluten-free.

[MollyBeth]

I just had an endoscopy on Friday...this is the third one I've had in my life. I've had severe stomach problems in the past. The endoscopy doesn't bother me at all...I'm saying this if it's the proceure you are worried about. It takes like 20 minutes and it's not painful. My blood test came back negative. That's why I opted for the Biopsy instead of just going straightto tryingthe diet. One of my main reasons is that I thought my family would be more supportive of my new gluten free lifestyle if I had a confirmed DX. I hope you find the answers you are looking for and start feeling better!!!

[julirama723]

Thank you for your replies!

I am not nervous about an endoscopy, it's just that I'm in an area that isn't very medically advanced for this sort of thing. (I currently live in a small town in Montana, I moved here about 3 years ago.) The doctor and lab tech had to look up celiac disease in a medical book or online or something. My blood test had to be sent to the Mayo Clinic as nobody in the state apparently tests for celiac? Or perhaps it's because I'm in a small, isolated town--if I had been in a bigger city, perhaps the sample would have been tested there?

Anyway, my hesitation about getting scoped is simply because I haven't met anyone here who knows anything about gluten or gluten-intolerance or celiac disease. If I still lived in Michigan, this would be no problem.

Even though I have not had an official diagnosis, I didn't want to keep eating wheat, now that I knew it was causing my symptoms and making me feel like crap. I started gluten-free on Friday and I've been keeping a journal to track foods and physical reactions. Gluten-free isn't that much different than Atkins, except I'm avoiding most grains (corn is ok so far) and double-checking sauces, dressings, etc.

One thing I noticed is that my appetite seems to have returned to a normal human appetite. And I haven't had any gas or bloating all weekend (with the exception of soy milk, for some reason, perhaps it's another ingredient in the milk, though it claims to be gluten-free? All the ingredients check out, so I'm still trying to figure that one out) and I have already lost a couple of pounds.

I know this will be a long road, and I know it won't be easy, especially in social situations, but I'm already used to being somewhat ostracised by others for my food choices. (I have refused to eat refined flours and sugars for over 2 years now, and a lot of people take it personally, for some reason. Like I'm refusing their friendship instead of their cookies.) Luckily, my fiance is very supportive, and my friends are used to my "picky" eating habits anyway. (I don't think I'm picky, just healthy!)

Thank you for all of your advice! I know that technically I should have kept eating gluten and gotten an endoscopy for an official diagnosis, but I thought about it and thought about it and decided I didn't want to keep making myself feel sick. I know I can stick to the plan without an official dX. Thanks again!