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Getting Diagnosed

mikehall117

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mikehall117 Rookie
mikehall117
Posted

I am seeing my doctor later today and I am going to ask to be referred to a specialist for proper diagnosis. I have checked and my medical insurance will cover pre-existing conditions so I should be able to get referred to a consultant.

The problem is that my wife doesn't want me to get diagnosed if it means I have to reintroduce gluten into my diet, even for a few days. She is so worried that I will be asked to do this she wants to come to the doctors with me to make sure I don't even contemplate the option.

I get very depressed with terrible migraines and mood swings when I eat gluten, not to mention the discomfort, bloating and DH. I am very keen to get a positive medical diagnosis from blood work and biopsy however I don't want to put my wife through hell! Are there other ways of getting diagnosed without having to undertake a gluten challenge? Will the anecdotal evidence from my past be sufficient?

What can I tell her? I have explained how important it is to know whether I have the disease so I can act accordingly, not to mention letting my siblings and parents know so they can get checked and of course making sure we monitor any kids we may have one day.

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tarnalberry Community Regular
tarnalberry
Posted

I'll tell you what I did in this situation - I had inconclusive blood tests because I went gluten free too early (but not a long time before the blood tests). I did not pursue any further testing past the dietary challenge, because it's not worth the time/money (opportunity cost of what you'll miss while you're "sick")/misery to me. So, I assume that I likely have celiac.

Could I "just" have gluten intolerance? Yes. But I could also have celiac.

From *my* perspective, it doesn't matter; I stay gluten free.

From my family's perspective, I still say it doesn't matter; they should be tested. Why? Because there are too many false negatives on celiac disease. Given the relative risk of untreated celiac, and the frequency of asymptomatic celiac, I would rather give the benefit of the doubt that "just gluten intolerance" is an undiagnosed celiac case when asking family members to get tested.

No, I'm not saying that gluten intolerance on its own doesn't exist, I'm saying the relative risk/reward is one that says "make the assumption that doesn't take 10 years off your life given that the treatment course is the same".

As for whether or not sypmtomology and dietary response will be enough for diagnosis for your doctor, that entirely depends on your doctor. For most of mine, they said "yup, sounds like it's likely celiac, makes sense to avoid gluten". That is *not* a definitive diagnosis, but it is medical support of a "likely diagnosis" and the treatment.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Why do you need the test to "prove" it? You already know the answer.

leadmeastray88 Contributor
leadmeastray88
Posted
As for whether or not sypmtomology and dietary response will be enough for diagnosis for your doctor, that entirely depends on your doctor. For most of mine, they said "yup, sounds like it's likely celiac, makes sense to avoid gluten". That is *not* a definitive diagnosis, but it is medical support of a "likely diagnosis" and the treatment.

I was lucky and had the same response from my doctor. She said that because of my family history and resolution of symptoms, I *most likely* had Celiac and she didn't push me to do a challenge for more testing because I was doing so much better gluten free. Basically, if it hurts you don't do it!

You know you're better without gluten and you'll probably never go back even if you do get negative tests, right? At the end of the day, you have to do what you feel is right for you.

Mtndog Collaborator
Mtndog
Posted
I was lucky and had the same response from my doctor. She said that because of my family history and resolution of symptoms, I *most likely* had Celiac and she didn't push me to do a challenge for more testing because I was doing so much better gluten free. Basically, if it hurts you don't do it!

You know you're better without gluten and you'll probably never go back even if you do get negative tests, right? At the end of the day, you have to do what you feel is right for you.

Me too- she did do the Prometheus Gene Test and I came back positive for one of the two celiac genes. That was Enough for her and me!

flourgirl Apprentice
flourgirl
Posted

You can still urge family members to get tested because of your response to the diet, and because of the likelyhood that it is there within your family. You also have the option of testing your future children for the same reasons....all without putting yourself through the agony and risk. If you don't absolutely need a concrete diagnosis, I see no reason to go through with it. Even with my "proper" diagnosis, most of my family members will not get tested themselves...even with many health issues. All I can do is urge them to do this, give them information, and hope that someday they will make that decision. You must do what is best for you in any case. The diet works for you...what more do you need?

weluvgators Explorer
weluvgators
Posted

For me, I recently decided to do the Enterolab screening with genetic testing. But, I had been looking and thinking about it for a long time. And, I had been gluten free for over 1

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GFinDC Veteran
GFinDC
Posted

My doctor diagnosed me from symptoms, even though my blood test was negative. I had been gluten-free for 4 months prior to testing, so no surprise on the blood test. I had written down my symptoms before seeing him, and the gene test showed celiac genes also.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

If you already know you have DH (on top of all the other symptoms, too!), then you already have your diagnosis.

Be aware that insurance companies may use an official diagnosis of celiac disease to deny you coverage down the road, if you were to switch insurance companies or apply for new insurance. They will call it a "pre-existing condition with likelihood of further complications or concurrent problems." This has happened to people both with health insurance companies and with life insurance companies.

fripp017 Apprentice
fripp017
Posted

For some reason, I seem to go against most of the forum members on this one, because I went through alot doctors to find out that I had Celiac Disease. Most of the members replied similar posts about staying on the diet, which is VERY good advice. But, I figured I would play devil's advocate.

I have two children and I wanted to know if I had Celiac or not so I would know if they should be tested. Plus, part of me really wanted to know what was wrong. My GI specialist was a jerk, told me I shouldn't waste my time getting my children tested, and that all forms of gluten intolerance, allergy, and Celiac Disease are basically the same thing. (I have yet to determine if that is true or not.) He told me I "probably" have Celiac Disease, but he wouldn't give me the diagnosis. (My primary care doctor thinks I may have caught it very early so I didn't kill my small intestine enough to tell.)

I just had my 22-month-old daughter tested (she kinda presents symptoms but it's hard to tell if it's terrible two's or Celiac :) ). I just found out a couple of days ago that she at least has a gluten intolerance and the doctor will be sending her to a pediatric GI specialist.

All I'm trying to say is do what makes you sleep better at night! I had to go back on gluten to be tested. My husband had a hard time, but he knew I needed to know. I had alot of people thinking I was depressed or acting sick for attention. I think it depends on your situation. Also, if you go back on gluten - the next time you are gluten free and you look at the cookie and think, "It wouldn't hurt me that bad," you would know how bad it would really hurt you lol.

Best of luck and I hope my story helps.

Jessy

ang1e0251 Contributor
ang1e0251
Posted

Most allergists would agree with a GFD just on the dietary response alone. Most allergists I have heard of lately do eventually put their patients on a challenge diet to prove the sensitivity. The testing is unpredictable. I wouldn't go bad on gluten to be tested. It makes me too sick.

Talk to your dr but I would think your dietary response, backed up by your spouse, and a gene test would be conclusive. You wouldn't have to eat gluten for that.

You don't have to have a celiac medal to ask your family to be tested. It's a simple blood test. And be prepared, most of them will probably opt out of testing.

Tallforagirl Rookie
Tallforagirl
Posted
I get very depressed with terrible migraines and mood swings when I eat gluten, not to mention the discomfort, bloating and DH. I am very keen to get a positive medical diagnosis from blood work and biopsy however I don't want to put my wife through hell! Are there other ways of getting diagnosed without having to undertake a gluten challenge? Will the anecdotal evidence from my past be sufficient?

It's possible you may still be able to get a skin biopsy from your DH if you have active lesions. If your skin biopsy is positive for DH then you are positive for celiac disease, you don't need a gut biopsy.

Your doctor may be willing to diagnose on dietary response alone, or dietary response plus genetics (if you have the gene test).

mommida Enthusiast
mommida
Posted

A gluten challange can be dangerous. It could lead to dehydration. When the body gets dehydrated it puts stress on your internal organs. (Not to mention injuries from you passing out.)

The health and life insurance coverage is another reason to think how much an official medical diagnoses will cost you.

Sounds like your wife loves you very much, and doesn't want to see you suffer.

CMG Rookie
CMG
Posted

You won't necessarily get a positive diagnosis after a gluten challenge. I tried it a couple of months ago and was had worse symptoms during the challenge than I ever did before having gone gluten free. I've read quite a few posts of people who have had negative tests after gluten challenges, but still know that they respond well to the gluten free diet.

Also, I think I read somewhere that a dermatologist can trigger a DH outbreak using an iodine patch. Maybe something to investigate if your DH hasn't already been confirmed and you really want a diagnosis.

prayin4achange Newbie
prayin4achange
Posted
All I'm trying to say is do what makes you sleep better at night! I had to go back on gluten to be tested. My husband had a hard time, but he knew I needed to know. I had alot of people thinking I was depressed or acting sick for attention. I think it depends on your situation. Also, if you go back on gluten - the next time you are gluten free and you look at the cookie and think, "It wouldn't hurt me that bad," you would know how bad it would really hurt you lol.

Best of luck and I hope my story helps.

Jessy

Hey Jessy. I was wondering how long you were back on gluten before you could take the blood test and what were your results?

fripp017 Apprentice
fripp017
Posted
Hey Jessy. I was wondering how long you were back on gluten before you could take the blood test and what were your results?

I actually went back on gluten for my endoscopy. I had already had the blood tests and my Primary care doctor told me to go on a "low-gluten diet" since I didn't have a large response to gluten antibody-wise, but any gluten causes me serious abdominal pain and nausea. I went off gluten for a week and felt great!! When my GI said I was supposed to be eating it I was upset and told him I wanted the earliest appoinment available. I went back on gluten for about two weeks. It was hard. I was sleepy, irritable, and in pain. It's hard, but it was worth it. My endoscopy came back with damage to the small intestine, but not bad. That is why my GI wouldn't give me the full diagnosis. My Primary care doctor told me he thinks I caught it early since my symptoms were so bothersome/painful. I may not have gotten the full diagnosis, but I had to know. I even scheduled an appointment for a second opinion, but my I some insurance issues. So, that is probably my next chapter lol.

mushroom Proficient
mushroom
Posted
My endoscopy came back with damage to the small intestine, but not bad. That is why my GI wouldn't give me the full diagnosis.

What is that nonsense? I am assuming it was damage to the villi? Damage is damage; how much damage does he want you to have forevvinsake?

Ed-G Newbie
Ed-G
Posted

In my case I would most definitelty not be tested. There is too much I have to go through, and too much agony just to get what is most likely nothing better than an inconclusive result. I was diagnosed years before modern testing came out, and am not about to go through all that for nothing.

Ed in MD

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