How To Cope With "not Knowing"?

[Gluten Glutton]

I went gluten-free in October 2010 before having any testing done. In the area I live in, getting in to see a specialist can take months for something that is considered non-urgent (the waiting lists are long in certain specialties) and I didn't feel I could wait. My body literally felt like it was shutting down. I had so many classic celiac signs and vitamin deficiency signs (I made a list for my upcoming doc's appointment: 24 recognized symptoms. Yikes!). The stress of a couple of very difficult years seemed to have triggered them. I decided to give the gluten-free thing a try and see if it helped at all. I didn't think it would, but I was desperate for some immediate relief and gave it a shot.

Well, I was wrong. After a tough first week of withdrawal symptoms, I can honestly say I'm on the road to recovery. The majority of my symptoms have vanished and the rest have improved significantly. I feel like my old self again - maybe even better. My kids have their mom back, my spouse has his wife back, and I'm even down a few pounds (I'm considered obese and have never been able to take the weight off easily until now).

Anyway, I can't bring myself to go back on the gluten for another three months or so to get a blood test, then possibly wait another few weeks or months for a biopsy. I guess maybe I feel a bit of pressure from certain people in my life who say "but you don't KNOW, you just THINK this is a problem, right? Why would you make your life so difficult without confirmation?" And what do I say to that? I feel guilty asking people if we could go to a restaurant that has celiac-friendly options because I worry they're thinking I'm inconveniencing them without proof that it's needed. I know that's totally insecure of me, but there you have it.

I don't want to ever eat gluten again. I don't miss it - although I sometimes miss the convenience of it - and I know the proof is in the (gluten-free) pudding. I'm feeling better, I look better, I don't ever want to do that to my body again, even for testing (we are getting the kids tested, however). I guess I just don't know how or when I'm going to feel I can stop justifying myself. Heck, I think I even justify to people who aren't judging me. How sad is that?

My question is, how do I make peace with this? If you self-diagnosed, how did YOU come to terms with never having that piece of paper? And is it really that important that we have it?

[mushroom]

I think the important thing is that you get and stay healthy. I personally didnl't see any point in glutening and further harming myself for the sake of a test that identifies only those who have celiac disease, not those who are non-celiac gluten intolerant (and I truly believe that with the current state of testing more of us fall in the latter category.) Celiac disease to my mind is just one form of gluten intolerance; different bodies react to gluten in different ways - the symptoms are totally diffferent, why not the physical reactions within the body? why not different antibodies? some are even saying now that there may not be an antibody response at all, that the NK(natural killer) cells may be involved directly (will try to find this reference).. The gold standard of celiac diagnosis is the small intestine biopsy, but some do not have any GI damage, they have only neurological symptoms (and some have both and others besides).

So you have to feel confident that you have made the right decision, that this is what was causing your problems, and make this an impregnable attitude that no one can penetrate. Gluten makes me sick, so I don't eat it. Like I don't eat arsenic or rat poison, or cat turds, or whatever gross thing you can think of. What other people think is other people's business. If they are not prepared to respect your decision that is not your responsibility. We each must do what we perceive as best for our own health and survival. You would not force a diabetic to eat candy over his protests; which should someone force you or attempt to strongarm you to eat gluten over your objections?

What it all boils down to is the piece of paper certifies one form of gluten intolerance only. The fact that there is no piece of paper to verify your intolerance is not our fault;'science just has not caught up yet. and the doctors have not even caught up to test for celiac instead of spouting "IBS". But the testing could be important for your kids (if) they have celiac disease, because then you have the piece of paper to wave at the school and say, "You have to keep my child gluten free."

[anabananakins]

I really agree with all that Mushroom wrote, and it's how I handle things. I was talking to a coworker the other day and she was spouting off stupid theories about how maybe if we all ate small amounts of gluten we'd be able to tolerate it better (I'd been explaining about how since I've gone totally gluten free, I'm much more sensitive). I told her that was ridiculous, that it was an autoimmune reaction. And I said that I wouldn't eat gluten again even if I was offered $1000 to do so. At that point I think at least she realised I was serious.

I'm not officially diagnosed and god knows I tried. I was gluten free 3 weeks accidently (following the paleo diet, just eating fruits, meat, veges). When I started feeling sick when I deviated from this, I started researching. I ate large amounts of gluten every single day for over 3 months. I gained 15 pounds doing so but I was determined to do a proper gluten challenge. And I still tested negative. Gene test negative too. I didn't care, went gluten free and felt AMAZINGLY different within a few days. For the first time in my memory I discovered what it was not to have a stomach ache all the time (I didn't realise those were stomach aches, I thought it was a normal way to feel). I'm not going to let anyone do anything that would make me feel sick like that again just so I can make them happy by eating in the way that ignorant people think is "normal" (there's nothing normal about the weird processed stuff most people chose to eat).

If people ask, I say that I'm not diagnosed under the current standards but that there is so much researchers don't know. I mention my balance problems and how there is lots of research to show that gluten can cause neurological problems even in people without celiac. I feel that the current definition/diagnosis only covers some aspects of the many bad effects gluten has on our bodies.

You don't need a diagnosis to know that you've made the best choice for you. Don't let anyone push you around, and don't feel bad about asking for support. BTW, with restaurants what I do is look up a few and then suggest them for the others to choose from, so it's not me dictating where we eat all the time. I find people like suggestions anyway. Replying "dunno" to the question "where would you like to go" is much more annoying that saying "well, how about X or Y or Z?"

Anyway, sorry for such a long reply! All the best to you :-)

[RollingAlong]

I think if you can clarify what it is that you "don't know", you may be able to find a way to solve your problem. Or alternatively, there are things that you know and things that you don't, but overall you know more.

What about enterolab? then you could say that you finally had the testing done and it is official.

Have you challenged gluten at all since you changed your diet? That may tell you something. Either way, you are going to feel better about this whole thing with time. You only started in October and probably are still repairing things.

My spouse had all the tests and a biopsy after a miserable 3 month gluten challenge. All negative, but trust me, he knows everything he needs to know.

[cassP]

i completely understand... i went back to eating gluten even after i had my blood test- because the addiction is that strong- and since neither me or my doctors understood my "inconclusive" test results enough to know there was a big problem- it didnt seem to be enough to keep me off of it.

i continued to only look at it as a "diet" thing with some uncomfortable side effects- so i would still "cheat".

but the "not knowing" and the addition of knowledge on all the symptoms that gluten can produce kept knawing away at me- and i just couldnt not think about it.

that's when i decided to ask my doc to mail me copies of my blood tests (2 years later)... and i ordered the Genetic test thru Enterolab. something just told me inside that i needed to look at everything again.

so, i TOTALLY understand what you're feeling. maybe you should do the genetic test. it really only tells you if you have a predisposition- but it was enough to light a fire under my A.

i hope that you can remain on this gluten free path without having the "proof"

[Marz]

I asked this question a while ago as well - how to keep on the straight and narrow, knowing that you don't have an official diagnosis. I'm still struggling with it, but I do know I'm feeling so much better there's no turning back.

Have you been accidentally glutened since going gluten-free? You could then have some indication of how badly you'd be if you went back onto gluten. Your body's reaction should be proof enough! If you haven't been glutened - well done! Perhaps if you want to do so, you can do a gluten-challenge, of eating wheat 3 times a day for a period of time. This can be done for getting blood tests after going gluten-free (Requires a few months of being on gluten :/) Or you can do it for a week or two and gauge your reaction - if it's pretty obvious, then you've got your answer, and you really don't need a paper diagnosis to tell you gluten makes you sick!

In my case, I've unfortunately been glutened a few times in spite of my best efforts. Once was after eating a "gluten-free" bread at an Indian restaurant. I contacted them afterward and they were embarrassed to say that after double-checking the flour package, they discovered it did contain a warning for containing gluten. I was so sick that night - shakes, d, nausea - and it was 100% not psychological since I thought the meal had been safe. That pretty much proves to myself that gluten makes me sick. It sucks, but at least I know what's wrong with me now!

[cdog7]

I can relate to this! I tried very hard to get a diagnosis, in part because I had been so horribly sick for months that I was missing work and barely functioning. Other people in my life needed an explanation as much as I did. My biggest obstacles were bad doctors

[Marz]

He directed me to yet another doctor who was convinced before examining me that I wasn't celiac, again because I had gained weight instead of losing it

[cdog7]

True, most of the more groundbreaking celiac research has only gone on in the past few years! So someone who went to medical school and established a practice during that time most likely didn't learn about it, unless they really went out of their way. Like you said, it's been off the radar screen, and hopefully that's starting to change.

Recently I saw a dictionary definition of celiac from 1985 that read:

"Celiac Disease n. A chronic nutritional disturbance of infants and

young children, caused by improper absorption of fats and resulting in

malnutrition, distended abdomen, and diarrhea."

Already, that's completely wrong! Not even a mention of gluten or wheat. That's how much has changed in what seems like a short time to me

[RhubarbGranny]

I self diagnosed myself 10 years ago as having a wheat allergy and have progressed to the point of deciding I am either gluten intolerant or have Celiac. It really doesn't matter which it is because the treatment for both if basically the same...Don't Eat Gluten. I treat my problem as Celiac because there is so much more information available on it. This site is wonderful, I have learned more here in the short 3 months since I found it than in the entire 10 years since I discovered what my problem is.

I can't find a Dr. in my area that will take my problem seriously, the only one who offered to test for Celiac did a blood test, well duhhh, I have been basically gluten free for 10 years so of course it's going to come up negative. I now treat myself by eating as gluten free as I can and searching online for anything new I can learn. It's been a slow process but after a life time of suffering from this disease, I can see light at the end of the tunnel. The not "not knowing" is no problem. I don't need a "name", just how to treat my problem and regain my health is enough.