I'm So Confused On How To Proceed

Mrs.Doyle · August 5, 2009

I am a basket case this morning and I don't know what to do...

I started being Gluten free the beginning of June and felt incredibly better. Figured out some other foods that gave me troubles, and started taking a lot of vitamins. I ended up at the Dr at the end of June for something else and requested my chart be updated to reflect intolerances to wheat, dairy, eggs and nightshades. Dr then referred me to allergist to get more testing to help with the process of figuring out food issues. Finally saw allergist end of July and he wanted to test for Celiac, said to eat gluten foods for 3-4 days and then test blood. I had a severe and immediate reaction to the gluten, but stuck it out and did blood work. This morning blood work came back as negative for celiac and now I am wondering after reading so much if I didn't have enough gluten in my system for the tests to be accurate, if enough healing had occurred in the two months of being gluten free & heavy vitamins, or if I am just gluten intolerant.

I just don't know what to do now... I had continued to eat gluten foods in case a biopsy was needed. So now I'm left wondering did I have a false negative because of the two months gluten-free and limited time of gluten challene? Is it worth pushing for a biopsy? Why do I even care what the Doc's have to say when the solution for me is don't eat gluten?

This has hit me harder than I ever would have thought possible and I am deeply depressed now (crazy how fast that can happen). I guess I'm ashamed too, that so many people have been so caring toward me while I figure this out and now I feel like I failed them because I'm not officially celiac and I'm worried that they will look at the intolerance of gluten as just being wussy and needing to *wo-man up*...

Do I just say my test results are inconclusive, go gluten free and forget about any support from western medicine?

elye · August 5, 2009

Mrs.Doyle said:
Why do I even care what the Doc's have to say when the solution for me is don't eat gluten?

Hear, hear! What do you care? You have your diagnosis. For many, many people, myself included, and for some professionals (but they are harder to find), the only truly accurate diagnostic tool for gluten issues is dietary response. False negatives on the blood panel are common - - likely a third of all negatives, and these are with people who are consuming the equivalent of 4 pieces of bread a day for two to three months beforehand. I would say that the likelihood of your negative being false, after only being back on gluten for a few days, is very high, coupled with the way you feel when you are eating the stuff.

Mrs.Doyle said:
Do I just say my test results are inconclusive, go gluten free and forget about any support from western medicine?

Yep. Scores of us are doing it. I had a positive blood panel, and a positive subsequent biopsy, having had NO symptoms beforehand - - quite amazing that I was diagnosed at all, really. My husband, who had all of the classic symptoms, had a negative blood panel and a negative biopsy. He eventually had the stool test done and there were the antibodies - - lots of them.

Is DH any less of an "official" celiac than I am, as he didn't get an "official" Western gold-standard diagnosis? Well, he is a different guy off gluten......all of his GI and neurological symptoms are gone. So that is good enough for us. He absolutely has trouble with gluten. You know that you do, too. Listen to that brilliant body of yours, and continue on the road to greater, better health!

The Fluffy Assassin · August 5, 2009

Mrs.Doyle said:
Why do I even care what the Doc's have to say when the solution for me is don't eat gluten?

You said it all right there.

The odds are that your gluten challenge was not long enough for anybody to say whether or not your blood test is conclusive. However, the results of eating gluten were so severe that it's very inadvisable for you to go on eating gluten for any reason. Therefore, the first thing to do is get the hell off of gluten. The second thing to do (if you're hell-bent on having a diagnosis, that is) is to scout around for a doctor who is sane enough (oops, I mean open-minded enough) to diagnose you on the basis of dietary response. The Doctors forum on this board is a good source for finding one, I understand. And know for sure that you are far from a basket case, and that you'll be feeling better within a week or so after going gluten-free again (or anyway as quickly as you did when you did it the first time).

I just tell people I'm celiac; nobody yet has grilled me as to whether I have a doctor's diagnosis or whether I diagnosed myself (as I in fact did). If anyone does, though, "I have a very severe reaction whenever I eat gluten," ought to cover it nicely.

ang1e0251 · August 5, 2009

Here, here!! I am self diagnosed and I don't give a hoot whether a dr believes me or not. I tell anyone who's business it is that I have celiac disease and I sincerely believe I do. The dietary response is dramatic and the rashes, DH, are gone unless I get glutened. I have a family history of auto immunes and I think I probably got it from my dad. I suspect my sister has a form of it too. She's diabetic and had UBO's on her brain scan. Probably my niece too with PCOS.

Don't let testing get you down. As previously stated, your body is telling you what it needs and doesn't need; simply listen to it.

ravenwoodglass · August 5, 2009

If I had to wait for a blood test to 'prove' I was celiac I would be dead, no kidding on that! As stated you did not have enough of a challenge for the bloodwork to have had a chance for a positive result after eliminating gluten for a couple months. Gluten may very well be behind the mood issues you are experiencing also. Go easy on yourself and consider yourself diagnosed based on the best diagnostic there is, IMHO, your response to the diet and the negative consequences of the challenge.

Mrs.Doyle · August 5, 2009

I think I have been struggling with getting a *label* as Celiac to get my family to take this seriously. So I have decided to go with the following statement:

My blood work is inconclusive but it is probable celiac disease because of dietary response. Please get yourself tested as this is a genetic disorder.

I'm narrowing down my struggle to my inability to work around the word "intolerant." While I realize the word has several literal definitions, I'm getting stuck in the one that simply means a dislike, as in "I am intolerant of idiots who don't take my food issues seriously."

My Mum-in-law helped tremendously when she told me to tell people to shove it and to go ahead and be *high maintenance* because I am worth any amount of maintenance because I am so wonderful... God Bless that woman! She had already started researching what I could/couldn't eat before I even had the blood test because she took my *intolerance* seriously... if everyone could be as amazing as her!

So now down to counting my blessings...

1. I know what makes me sick (gluten)

2. My Mum-in-law takes this seriously

3. My husband is incredibly supportive

4. This Forum.... Thank you to everyone who has gone before and cleared this path, learned along the way, and is sharing it now!

5. At least I don't have an anaphylactic shock response when I get gluttened!

Thank you so much to those who responded. You helped me immensely! Never doubt for a second that spending a moment answering a question isn't important! Your input is beyond value! Thank you

ravenwoodglass · August 5, 2009

Mrs.Doyle said:
I think I have been struggling with getting a *label* as Celiac to get my family to take this seriously. So I have decided to go with the following statement:

My blood work is inconclusive but it is probable celiac disease because of dietary response. Please get yourself tested as this is a genetic disorder.

I'm narrowing down my struggle to my inability to work around the word "intolerant." While I realize the word has several literal definitions, I'm getting stuck in the one that simply means a dislike, as in "I am intolerant of idiots who don't take my food issues seriously."

My Mum-in-law helped tremendously when she told me to tell people to shove it and to go ahead and be *high maintenance* because I am worth any amount of maintenance because I am so wonderful... God Bless that woman! She had already started researching what I could/couldn't eat before I even had the blood test because she took my *intolerance* seriously... if everyone could be as amazing as her!

So now down to counting my blessings...
1. I know what makes me sick (gluten)
2. My Mum-in-law takes this seriously
3. My husband is incredibly supportive
4. This Forum.... Thank you to everyone who has gone before and cleared this path, learned along the way, and is sharing it now!
5. At least I don't have an anaphylactic shock response when I get gluttened!

Thank you so much to those who responded. You helped me immensely! Never doubt for a second that spending a moment answering a question isn't important! Your input is beyond value! Thank you

What a wonderful Mother in law you have! It is no wonder your husband is such a keeper with a mom like her. I am glad we were all able to help. Now on to healing. I hope you are feeling better soon.