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NotMollyRingwald

How Important Is An Official Diagnosis?

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Hi all.  I don't have a firm diagnosis, just a "likely celiac" label.  Seeing a GI in a couple weeks, whom I assume will want to scope/biopsy.  By the time the scope comes, I'll be at least 3 mo gluten-free (I've been very strict, but I'm sure there has been some CC here and there).  I can't decide if it's worth it.  I know that gluten bothers me.  I know that my GDA number was above the normal range, but that the tTg number was normal when I was tested 6 weeks gluten-free.  I know that to get accurate results, I should be consuming gluten for a while before the scope/biopsy...  What I don't know, and can't decide, is how important is an actual diagnosis?  I just can't think far enough ahead in time to imagine when/where it will help or where having a lack of a diagnose will hurt.  I would appreciate your opinion/experience with this... I'm still struggling to believe all this...kinda down and confused I guess...just don't feel normal right now and don't know how best to advocate for myself.  Anyway, thanks in advance for the input.

 

-Amy

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This was just on the University of Chicago Facebook page.  You might find it interesting:

 

"It is not. Five reasons exist as to why someone might feel better on a gluten-free diet. It’s crucial to understand which of the five is the cause in order to implement a safe dietary program.

1. Celiac disease
2. Non-celiac gluten sensitivity
3. Wheat allergy
4. Sensitivity to foods rich in FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides and polyols); wheat grains are rich in FODMAPs and those sensitive to them have reported marked improvement
5. Placebo effect (this is quite common in adults)

It’s unwise to maintain a gluten-free diet without diagnosing a specific health concern, as the above conditions differ profoundly in mechanisms, severity of damage, and complications. If already eating gluten free there’s no way to establish a diagnosis other than re-exposure to gluten. Plus, autoimmune diseases tend to cluster together in one individual and celiac disease is an inherited disease, so we believe it wise to understand the health risks for your other family members.

The duration of the challenge (12 weeks of ½ slice of bread or a cracker per day prior to a blood panel) is required for antibodies to appear in the blood, but it can be shortened from the 12 weeks because intestinal damage can occur within a week of re-exposure.

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Some other reasons to consider in getting an "official" diagnosis:

 

- Some people won't take the gluten-free diet seriously with no diagnosis

- Doctors, hospitals, nursing homes, etc do not have to give you gluten-free food

- It is genetic.  Having a first degree relative with it means you need to be tested.  For example - your kids

- Some Schools & colleges will need an official diagnosis before feeding you special food or letting you out of a food contract

- There are other illness that may go with a Celiac diagnosis

- rreason for an insurance company to pay for a name brand med that is gluten-free when the generic isn't

 

I'm sure you can think of more reasons for and against. Fortunately, you don't need a doctor to agree to prescribe meds or do procedures to treat Celiac. 

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This was just on the University of Chicago Facebook page.  You might find it interesting:

 

"It is not. Five reasons exist as to why someone might feel better on a gluten-free diet. It’s crucial to understand which of the five is the cause in order to implement a safe dietary program.

1. Celiac disease

2. Non-celiac gluten sensitivity

3. Wheat allergy

4. Sensitivity to foods rich in FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides and polyols); wheat grains are rich in FODMAPs and those sensitive to them have reported marked improvement

5. Placebo effect (this is quite common in adults)

It’s unwise to maintain a gluten-free diet without diagnosing a specific health concern, as the above conditions differ profoundly in mechanisms, severity of damage, and complications. If already eating gluten free there’s no way to establish a diagnosis other than re-exposure to gluten. Plus, autoimmune diseases tend to cluster together in one individual and celiac disease is an inherited disease, so we believe it wise to understand the health risks for your other family members.

The duration of the challenge (12 weeks of ½ slice of bread or a cracker per day prior to a blood panel) is required for antibodies to appear in the blood, but it can be shortened from the 12 weeks because intestinal damage can occur within a week of re-exposure.

 

Thank you for this!  

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Some other reasons to consider in getting an "official" diagnosis:

 

- Some people won't take the gluten-free diet seriously with no diagnosis

- Doctors, hospitals, nursing homes, etc do not have to give you gluten-free food

- It is genetic.  Having a first degree relative with it means you need to be tested.  For example - your kids

- Some Schools & colleges will need an official diagnosis before feeding you special food or letting you out of a food contract

- There are other illness that may go with a Celiac diagnosis

- rreason for an insurance company to pay for a name brand med that is gluten-free when the generic isn't

 

I'm sure you can think of more reasons for and against. Fortunately, you don't need a doctor to agree to prescribe meds or do procedures to treat Celiac. 

Again, these are great points...I have been wondering about my son.  He has had "intolerance issues" since birth and seems to be constipated a lot. I suppose my having a "real" celiac disease diagnosis would be more convincing to his Ped if I were to request he is tested...    And the gluten free Rx is something I had not thought of at all...I better go check labels/call the pharmacy.  Thank you!

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