importance or testing

[Donnaw61]

I've always had problems with my stomach which I assumed was IBS. The last few years, my problems has become increasingly worse including severe stomach pain, vomiting, and diarrhea so bad I could barely leave the house, I always had imodium with me and took it before I left the house. Last spring I ate some rolls I used to eat and loved. Each time I ate them, I became extremely ill. It hit me that it might be gluten. I cut gluten out and began to feel better. I found out I was mildly anemic and my hemoglobin was low. They didn't check for anything else. I added supplements and between not being constantly sick and the supplements, I began to feel better. I accidently ate gluten a couple of times and paid for it. I really try to be careful, but still have days that my stomach isn't happy but not near as bad. My doctor said that my symptoms are bad enough that it is probably celiacs. Does it matter if I don't have an official diagnosis as long as I am careful? I really don't want to eat gluten for 6 weeks to find out.

[trents]

Welcome to the forum, Donnaw61!

Getting an official diagnosis is not necessary and I believe you know the answer anyway. An official diagnosis may have the advantage of doctors taking you seriously and not viewing your claim as simply another self-diagnosed not case, if you know what I mean. Many physicians still do not take celiac disease seriously. It would also have the advantage of giving guidance to doctors who may be treating symptoms but ignoring the underlying cause when you come to them with medical issues related to celiac disease. Finally, it can be a psychological advantage in the sense of preventing cheating on your diet via rationalization. By the way, the pre-test gluten challenge for testing via endoscopy/biopsy is only two weeks (minimum) so you might look at that option.

[Donnaw61]

  On 10/9/2021 at 8:40 PM, trents said:

Welcome to the forum, Donnaw61!

Getting an official diagnosis is not necessary and I believe you know the answer anyway. An official diagnosis may have the advantage of doctors taking you seriously and not viewing your claim as simply another self-diagnosed not case, if you know what I mean. Many physicians still do not take celiac disease seriously. It would also have the advantage of giving guidance to doctors who may be treating symptoms but ignoring the underlying cause when you come to them with medical issues related to celiac disease. Finally, it can be a psychological advantage in the sense of preventing cheating on your diet via rationalization. By the way, the pre-test gluten challenge for testing via endoscopy/biopsy is only two weeks (minimum) so you might look at that option.

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Thank you. That is very helpful. I don't cheat. I don't like being that sick. Does anyone else seem to have mini flare up when you don't think you've eaten any gluten, or are bathroom issues something I will just have to live with. Not daily, but out of the blue.

[cristiana]

Hi Donna

I have mini-flare ups.   

I share a house with other gluten eaters so it's possible that trace amounts get into my diet that way.  Are you sharing a house with others who eat gluten?   

Eating out is also an issue for many of us on this forum.   I have been glutened so many times whilst eating out, even if the caterer has been quite adamant that they understand what gluten free means.  So could gluten be sneaking into your diet that way?

You could of course be developing an intolerance to something.  It might be worth keeping a food diary to see if a pattern is emerging.   I get diarrhea from time to time when I consume too much dairy.

Another thing to think about is you may have IBS as well as coeliac disease.   I've been diagnosed with both - it is possible.  Coeliac first, IBS more recently, by the same gastroenterologist.  When I have an IBS flare I find peppermint tea really helps.   I also try to take gluten free probiotics.

I realise you have been on the diet for a while now, but you may find the article below helpful.   There may be something you have been missing.

Cristiana

PS  Looking at your spelling of celiac it is unlikely you are British.  But if you are, in the UK there are real advantages of being formally diagnosed - you get annual check-ups and blood tests to check for dietary compliance and complications, a DEXA bone scan, and referral to a nutritionist, all for free via the National Health Service.    I mention this in case a) you are British and/or b) any British coeliacs are reading.   (I am British!)

 

 

Edited October 9, 2021 by cristiana

[Donnaw61]

  On 10/9/2021 at 10:08 PM, cristiana said:

Hi Donna

I have mini-flare ups.   

I share a house with other gluten eaters so it's possible that trace amounts get into my diet that way.  Are you sharing a house with others who eat gluten?   

Eating out is also an issue for many of us on this forum.   I have been glutened so many times whilst eating out, even if the caterer has been quite adamant that they understand what gluten free means.  So could gluten be sneaking into your diet that way?

You could of course be developing an intolerance to something.  It might be worth keeping a food diary to see if a pattern is emerging.   I get diarrhea from time to time when I consume too much dairy.

Another thing to think about is you may have IBS as well as coeliac disease.   I've been diagnosed with both - it is possible.  Coeliac first, IBS more recently, by the same gastroenterologist.  When I have an IBS flare I find peppermint tea really helps.   I also try to take gluten free probiotics.

I realise you have been on the diet for a while now, but you may find the article below helpful.   There may be something you have been missing.

Cristiana

PS  Looking at your spelling of celiac it is unlikely you are British.  But if you are, in the UK there are real advantages of being formally diagnosed - you get annual check-ups and blood tests to check for dietary compliance and complications, a DEXA bone scan, and referral to a nutritionist, all for free via the National Health Service.    I mention this in case a) you are British and/or b) any British coeliacs are reading.   (I am British!)

I am not British, but that would be nice. I'm American and a retired teacher. Unfortunately, by insurance is not too great right now. I've thought about dairy, but I just can't give that up too. I'm diabetic so I already have to watch what I eat. My husband eats gluten, and I try to be careful, but that's probably it.  We haven't been out in forever with all the Covid stuff but I order delivery sometimes. That has glutened me before even though the container said gluten free. It's all very frustrating. I did find a store that has a bigger selection of gluten free products than most. I've only been doing this since May. I'm sure my body is still recovering and this will get easier. Thanks for the help.

 

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[RMJ]

Is your doctor willing to put a celiac diagnosis in your medical record?  That could be helpful if you get into a situation where you have to convince other medical personnel of your need to be gluten free. If it is there you don’t need to volunteer that you weren’t officially tested.

[Donnaw61]

I’ll have to check and see.

[AlwaysLearning]

Congratulations on figuring things out!

I can't get tested because my reactions are so much worse now, but it really doesn't bother me. I can easily remember all of the health problems I dealt with before going gluten free and how great it was to have them all miraculously disappear within a week of changing my diet. So I don't need test results to keep me honest.

The biggest problem I had to deal with is people thinking I was just doing a fad diet for no real reason. But that really wasn't my problem. Several years into my being gluten free, my mother started saying that she "believed me", not realizing that it revealed that for the first several years, she didn't believe me. Ironic because she most likely has celiac too.

But for the most part, people aren't going to know if you do or do not have formal test results. Doctors diagnose plenty of diseases based purely on the symptoms of their patients so I don't see why so many people, especially those who experience the pain of gluten reactions, think that you "have" to have actual test results to have a diagnosis.

And I'm really glad that this forum no longer pushes the idea that testing is a necessity, like it did when I first went gluten-free. I wouldn't be here now if those moderators were still pushing their opinions on others.

Do what feels right for you!