Back On Gluten

[monkey123]

ok, so I have been gluten free for over a year now and every once in a while I believe that I actually can eat gluten and I was making it up. I haven't been diagnosed. I went to a horrible doctor who asked me why everyone wanted to have celiacs, she didnt understand why I wanted it.. That made me laugh. Anyways, I went off of gluten before I got the blood test and the results came back negative. So she told me to stay off gluten if it upsets my stomach like she stays away from onions because that doesn't sit well with her.. I wanted to slap her.

ANYWAYS, So I have been eating gluten again this week, simply because I thought I could. I continued to eat it because my pain wasn't very severe so I started to play mind games with myself saying I was making that up. And now I am convinced that gluten is the issue once again, because I am bloated right away, and almost feel nauseas, and weird things that I haven't felt before.

When I ate gluten before it was just the worst pain and constant D, headaches, extreme fatigue, and no willingness to do anything, but now it seems to be more gas, maybe some constipation, head aches, a little pain, and nausea. Does it sound like I have celiac? I want to get tested but I am not sure how to go about that, and how does having celiacs affect insurance? I guess I am just wondering what my next step should be?

Any feedback would be much appreciated!

[dizzygrinch]

Hi Monkey, I have not been officially diagnosed yet, but I figured I would say something. I have several posts here on this board, about my journey. I have been diagnosed all my adult life with IBS, had almost every test you can think of, seen several different GI docs, and have only been told I have IBS. Well, after all these years of suffering, putting two and two together, at first I just realized I couldnt eat the quote "healthy stuff". I realized that whole grains, whole wheat, and all that "good" fiber, the GI's told me to eat, was making me worse! so, eventually, I stumbled across Celiac disease, or gluten sensitivity. Hence, I have been visiting this board and trying to take charge of my life. Anyway. So, my last colonoscopy and endoscopy was just last year, and even though I have "flattened mucosa", that GI said I was normal, I have no signs of colitis, or Chrons (sp), he just said I have IBS, prescribed even more pills, said to increase fiber (go figure) and sent me on my way. Even though, he knows I have been diagnosed with severe vitamin D defecency, rhurmatiod arthritis, gerd, other things I cant think of at the moment. So, long story short, I stopped gluten for a while, and yep, guess what, started to feel a LOT better. Then, just last week, I finally seen an endocronoligist, for low vitamin D, and when I mentioned to her the findings of flattened mucosa, she started asking questions, that a GI doc should have been asking, anway, she said, that sounds like Celiac, that would explain why you cant absorb vitamins. So, God bless her, she is running tests. In fact, I noticed she actually ordered a celiac blood panel test, (however, since I have been gluten free for a while, that test may not be accurate) I was just amazed that it took an endo doc, after all these years, to even say the words Celiac. I didnt even voice my suspicions to her, because I figured it wasnt her specialty anyway. She brought it up to me. So, here I am at a dillema myself, I thought to myself, maybe I should eat gluten for a short while, till the blood test is done, (even though it probably wont make a difference, and I will probably get a false negative anyway), and Im dying. Well, proof enough. If you eat it, and you get sick. That should be enough, right? but, on the other hand, why am I eating it just for a test? maybe, after all, a diagnosis would help, at least to prove to ourselfs were not crazy after all, especially after all these docs after all these years, dont do anything to help....

[mhb]

Then again, in my case, over the years I've seen four endos and three internists (moved a lot) for very irregular periods and adult acne. They couldn't agree whether I had PCOS or not, but BCPs and Metformin worked and I took first the one, then the other, for years. Found out on my own that gluten can cause menstrual problems, went off it (and the PCOS meds), and got five periods in a row at age 46 - first time ever regular. (Acne resolves when I'm off dairy, and my "free testosterone" is the lowest ever but still normal, even compared with being on PCOS meds.) So, with docs, it's luck of the draw. I didn't test before going off. Sometimes that bothers me, sometimes not. First of all, those dang false negatives, whether blood work or endoscopy. Second of all, shouldn't non-celiac intolerance be treated the same as celiac anyway? Stay off what your body doesn't like. So I've come to feel the diet is the best dx. If it helps, stay off. You've got a gluten issue. If I test neg for celiac endoscopy it would be too easy to take lightly a "mere" intolerance that screwed up my reproductive system my whole life. I'm getting more and more inclined to just call myself a celiac so myself and others take the obvious (diet = symptoms resolve) seriously. Sometimes it does help to repeat myself here or I also begin to question. I should write my story in detail, frame it, and put it on a wall!

[mushroom]

Wild horses wouldn't make me go back on gluten for 2-3 months just to get tested to satisfy someone else's need to know whether or not I am a celiac. When I think of all the damage it has done to me over the years, including some things that don't go away like psoriasis and rheumatoid arthritis, and the things I am still working on, like trying to get my pancreas producing digestive enzymes again, it would be total insanity for me personally to do that.

There are some insurance companies that are concerned with a celiac diagnosis; to others it does not seem to matter that much. It is just the luck of the draw. Personally, having worked in the litigation field I try to keep as much out of my medical records as possible to keep it from being used against me. But that is a personal perspective.

I know I don't need a definitive diagnosis from a medical person to stay the course. To others it is important. Just remember you do not need anyone's permission to follow a gluten-free diet. If you feel you do need a diagnosis then perhaps you could consider having testing for the celiac genes. This testing does not require you to eat gluten since you cannot alter what genes you have inherited.

Good luck to you whichever course you choose. Just remember it IS a choice.

[dizzygrinch]

Hello, okay, so, Im dying. Bad stomach pain. What in the heck am I thinking! I feel bad, like in a way I should be eating gluten because I feel guilty because I have a doctor that actually ordered the blood tests, so, stupid me, started to eat gluten. How dumb am I?? I give up. Im just gonna get the blood tests, and what ever happens, happens. Nothing is worth this pain Im having right now....just had to vent. sorry.

[luciddream928]

Has anyone read "The Gluten Connection"? The author talks about gluten and the myriad of health issues that are associated with an intolerance, plus she talks about the medical establishment's attitude toward the whole issue. She offers many cases of people who were misdiagnosed for years but felt better after weeks off gluten. Great read.

I often struggle with the "I'm crazy, why am I doing this, I can eat gluten." Then I have a slip up and feel like dog doo. There's the proof!

[caligirl2001]

I've had similar symptoms. I have been nauseous since July, headaches, extreme fatigue, joint & muscle pain, trouble swallowing pasta and anything whole wheat - but no trouble swallowing anything highly processed, though the nausea/headache was constant. All blood tests from my doctor turned up normal, also apparently negative for celiac, and I was told nausea was not a symptom of an allergic reaction??

So 10 days ago, I decided to try gluten free because I was at the end of my rope because of the nausea & headache, and within 24 hours, the headache I had had for 6 weeks was almost gone, and within 3 days, the nausea was all but gone. I don't care what the doctor said, all I know is I feel so much better that it is all worth it, even though I am a bread fiend.

[lizard00]

I've had similar symptoms. I have been nauseous since July, headaches, extreme fatigue, joint & muscle pain, trouble swallowing pasta and anything whole wheat - but no trouble swallowing anything highly processed, though the nausea/headache was constant. All blood tests from my doctor turned up normal, also apparently negative for celiac, and I was told nausea was not a symptom of an allergic reaction??

So 10 days ago, I decided to try gluten free because I was at the end of my rope because of the nausea & headache, and within 24 hours, the headache I had had for 6 weeks was almost gone, and within 3 days, the nausea was all but gone. I don't care what the doctor said, all I know is I feel so much better that it is all worth it, even though I am a bread fiend.

Hi and welcome to the forum!

You sound like me a year ago. I hope you continue to get better! It can be tough, so hang in there!

And BTW, I am allergic to egg whites and if I eat anything with eggs in it, I get nauseous. You know your symptoms. Stick with it.

[spunky]

I have no diagnosis but I'm 101% sure I have celiac disease.

Something in our heads tells us it's wrong to know what's wrong without a doctor's stamp of approval on it... sometimes I wonder and catch myself thinking ,"But there's no diagnosis so maybe I don't have it." But then all I have to do is remember back how my life used to be, all of my symptoms, how I made excuses for staying home all the time, how I carried extra underwear around with me all the time, just all the uncomfortable symptoms and the difference in my life today... so... it is tempting to wish some doctor could just give me the official diagnosis, just to validate everything. But I don't need that, because the difference in my gluten free life is so huge, whenever I stop to remember... and thank goodness I DO have to REMEMBER how life used to be for me, and it's not that way anymore.

Now, as to insurance... would it make a difference if somebody had that specific diagnosis???? Because treatments for any related issues would still be covered, no matter what the cause... it would seem to me that insurance-wise, it might be better (in the U.S.) to not have the diagnosis... I mean, it's not like they'll pay for your special foods or anything.

THe thing that gets me, though, is that I don't know if I can make anyone else believe me... like, I don't do doctors at all, have absolutely no confidence in their ability to diagnosis, listen, medicate properly, or know what the heck to do... they lost me on trusting them for those things several decades ago and I just don't go to doctors... however, I do need dentists, and I'm not sure how to make them understand I do react very badly to gluten, or if I was in a hospital for some reason... how could I make them understand the importance of being gluten free, without that official diagnosis.

Seems also it would be easier to get it through to family and friends if I could just say, "Dr. so-&-so says I am not permitted to eat anything with gluten..." I mean, I think that would be easier and carry more authority than when I go through the whole ordeal of what I've been through, my own struggles to figure out what was wrong, the rollercoaster ride when I first went gluten free, how I gradually got better, how much better I am now, how sure I am, how come I didn't go to a doctor for a diagnosis... blah, blah, blah... it's just a lot of explainaing and it feels more like I'm defending my own diagnosis than relaying the info to others I sometimes eat with. So... that's the biggest reason I regret never having been officially diagnosed. But I'm not willing to go through the barbaric ways of modern medicine to get that official diagnosis....

[dizzygrinch]

Hi Spunky, you hit the nail on the head! Everything you said summed me up. I know in my heart, that I cant eat gluten. And, I know in my heart that must be the reason for all these ailments. All the doctors I have seen, can tell me something is wrong, but no one can ever tell me why. Yesterdays GI appointment was a nightmare. I posted that story here on a different thread. It is very, very, sad that doctors are just so willing to prescribe medicines, but never try to get to the bottom of things. Well, all but one. She is my endocronologist (sp) God bless her, she seems to be the only one willing to even try to figure out what is wrong with me. She ordered the bone scan I had a couple of weeks ago, that showed I have osteopenia (sp), and she also is trying to figure out WHY im so vitamin D deficiant. The GI doc I seen yesterday didnt even want to hear about any of my other problems. Just said I have IBS. So, I have given up on the GI docs, Im concentrating on just being gluten free, and working with my endo, to see why I cant absorb vitamins. She is the only one that even breathed the word celiac, and in fact she ordered a panel. But, since I have been gluten free for several weeks, that will most likely not be a positive result anyway. It was just interesting to me, the she is the only one that knows something is wrong, and wants to put the pieces of this puzzle together. Anyway, as far as docs go, she is my last hope. Other than that, I am going to be gluten free, and finally have a life! a life that isnt glued to a bathroom!

[spunky]

Wishing you the best!

All I can say is be patient... it took me the first 6 months gluten free to feel that I'd begun making real strides in better health... 2 years was a major turning point too... maybe you'll have success quicker, like some people here report...but be patient; it might take some time. It's well worth the efforts once good things start happening and you see your health turning around... ALL VERY WORTH IT, by that point!