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scouter99

Why Bother Getting Tested?

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After some other testing to try to find the source of what is wrong with me (symptoms consistent with everyone else here) I finally suggested the possibility it might be gluten related. I emailed my doc and this was her response:

"I would try changing you diet to see if you have relief. It is true that if you go on a gluten free diet that it can alter some of the tests. I would suggest starting the gluten free diet for 1 month to see if you have relief. If you do, great just continue the diet. If you don't then we need to keep looking and the next test would likely be a endoscopy/colonoscopy."

So here's my dilemma... I have been on the diet for 3 weeks and have had very little relief. I suspect I need to cut out dairy as well (like so many here have suggested because celiacs often have trouble with dairy at least at the beginning). My doc referred me to a dietician to get some support and I met with her today. She suggested that it could be up to 6 months before I really feel better (HUH!?!?!). Upon talking she did say that if I chose not to get tested yet that cross-contamination and dairy could be the culprits for why I'm not getting better, that or it is just going to take longer for me.

What would the main argument be for chucking it all, eating gluten again for awhile to counteract any effect my not eating it has had and then going for the dreaded testing? My doctor seems to think that a true diagnosis isn't necessary, that if I do the diet and feel better that's good enough to know that's what I need to do (given that there is no other treatment than diet anyway). So why go through all that (convince me please)?

My other option would be to tighten up on the diet even more by eliminating ALL cross-contamination (I still share a toaster, peanut butter jar, etc, because I didn't think during the initial trial phase those things would matter because I'd probably get better initially and then backslide from the cc, but the intial getting better hasn't occurred yet), as well as eliminate dairy. BUT- here is where it gets really confusing for me. How long would I have to do these things to really know if this is what my problem is in the end? Without testing I am shooting in the dark for an unspecified period of time waiting to see if I feel better.

Yes, I am a big baby and don't really want to get scoped from both ends, but I also don't want to waste time on a diet that might not help me in the end and then I'll find myself being scoped anyway to look for other things.

Am I rambling as bad as I think I am? Bottom line- I am already 3 weeks into the diet with little improvement but there are still other changes I can make here so I'm not sure I can really say the diet is a failure yet.... do I do that, or just bite the bullet and get tested? My doc will do whatever I want her to do.

thanks for your support!

Denise

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My other option would be to tighten up on the diet even more by eliminating ALL cross-contamination (I still share a toaster, peanut butter jar, etc, because I didn't think during the initial trial phase those things would matter because I'd probably get better initially and then backslide from the cc, but the intial getting better hasn't occurred yet), as well as eliminate dairy. BUT- here is where it gets really confusing for me. How long would I have to do these things to really know if this is what my problem is in the end? Without testing I am shooting in the dark for an unspecified period of time waiting to see if I feel better.

With celiac being an antibody reaction you need to be strict with the diet for it to be effective. You getting cross contaminated will keep the antibody reaction active and that may be why you are not getting any relief. While it can take some time to heal you should notice some relief within a month or so IF you are strict with the diet and also eliminate dairy. Not saying you will be totally healed in that month but you should notice some difference. The best thing to do is to go with whole unprocessed foods, avoid restaurants, check all meds and supplements and take the precautions you need to at home. If you decide to go the testing route then start back on a full gluten diet but be aware that there can be false negatives with both blood and biopsy so you would need to do a strict trial after those tests are done no matter what the results.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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My other option would be to tighten up on the diet even more by eliminating ALL cross-contamination (I still share a toaster, peanut butter jar, etc, because I didn't think during the initial trial phase those things would matter because I'd probably get better initially and then backslide from the cc, but the intial getting better hasn't occurred yet), as well as eliminate dairy. BUT- here is where it gets really confusing for me. How long would I have to do these things to really know if this is what my problem is in the end? Without testing I am shooting in the dark for an unspecified period of time waiting to see if I feel better.

...

Am I rambling as bad as I think I am? Bottom line- I am already 3 weeks into the diet with little improvement but there are still other changes I can make here so I'm not sure I can really say the diet is a failure yet.... do I do that, or just bite the bullet and get tested? My doc will do whatever I want her to do.

Here's the thing - you are NOT three weeks into the diet. You are getting gluten, regularly it looks like, from shared sources. So... you're... zero weeks into the diet? Try going truly gluten free for at least a month to see if you notice any changes. Yes, it might take six months for a big difference, but during that first month, you want to see if you notice *any* improvements.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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The reason why I am trying to get someone to say it's "official" for me is so that I can have a document for my FMLA at work. This whole thing has already made me use up my sick and personal leave this year and me and my husband had taken a big trip in the beginning of the summer before all of this started to get really bad. I don't want to end up in this situation again, so I want to make sure I have an FMLA on file that states I have a chronic condition.

That's my 2 cents. Now I just have to figure out how to get the doctor's to actually follow the correct procedure's testing wise.

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The reason why I am trying to get someone to say it's "official" for me is so that I can have a document for my FMLA at work. This whole thing has already made me use up my sick and personal leave this year and me and my husband had taken a big trip in the beginning of the summer before all of this started to get really bad. I don't want to end up in this situation again, so I want to make sure I have an FMLA on file that states I have a chronic condition.

That's my 2 cents. Now I just have to figure out how to get the doctor's to actually follow the correct procedure's testing wise.

Thank you - that is the first logical reason for getting an official "you have celiac disease" diagnoses. That makes sense and seems like a prudent thing to do. I too have missed alot of work because of "being glutened" and I know they think i am out having fun somewhere because it does happen more frequently than say a "cold".

I have been on here for awhile a don't (didn't) understand the value that some place on getting diagnosed. I mean you can't do much of anything other than change your lifestyle, right? And if you do and your symptoms go away, who the heck cares how many tests you've had done and when or how you were proclaimed "celiac". But having a FMLA document on file to save your job makes sense. Though still I don't get why so many folks put it on their signature for the forum.... you don't have to prove it to me - I don't know anyone that would go gluten free "for the fun of it". If you are gluten-free its usually cause of one health concern or another that you have to be - to me they all are important one is not "better" than the other....

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Though still I don't get why so many folks put it on their signature for the forum.... you don't have to prove it to me - I don't know anyone that would go gluten free "for the fun of it".

Signatures are primarily used to provide history so you don't have to constantly repeat yourself in your posts, as history and current intolerances usually play a part in questioning or providing insights to others.


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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Thanks for responding, everyone!! I have decided to stick with the diet for now because as one person mentioned- I was NOT really doing the diet properly!

I bought a new toaster, and am avoiding cross-contamination. I have eliminated dairy AND coffee as well and lo-and-behold, I am feeling better the last few days (haven't had a good day in a long time, and now I'm on day 3)!!! I ate out with my husband this past Friday and while I talked to the kitchen and told them my needs and thought I did it right, I felt HORRIBLE for a few days afterward! I decided that for now eating out probably isn't the best idea so I'm going to have to avoid it for now.

Denise

Signatures are primarily used to provide history so you don't have to constantly repeat yourself in your posts, as history and current intolerances usually play a part in questioning or providing insights to others.

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