Is My Doctor Full Of It?

[PacMan]

Ok, here's my current situation:

I just had my endoscopy and biopsy yesterday. The procedure went OK--the doctor said everything looked "normal" upon visual inspection, but that we'd have to wait for the biopsy results to come back next week to get a definitive diagnosis.

However, she said one thing that didn't quite sit right--she said I could NOT be allergic to gluten unless the biopsy came back positive for celiac disease. When I had the celiac disease panel run on my blood prior to this endoscopy, all those tests came back normal, except my Gliadin IgG level was 15.5 u/mL (when 10.0 or below is normal).

Some of the symptoms I have include intense bouts of nausea, extreme fatigue, mood swings, headaches, and joint/muscle pain. These come and go, and at their worst, will last for a full 7-10 days before letting up, and have been happening since early 2009.

Can anyone give me input on this? Thanks!

[tarnalberry]

your doctor is old school - where only a biopsy can diagnose celiac. she's also not thinking thoroughly about the issue. (otherwise, what happens if the genes just turned on - as some studies suggest that bacteria can do - and the autoimmune reaction is only very recent? does she expect a whole lot of damage in the gut for something recent? if so, why wouldn't they expect the same from other autoimmune diseases, like rheumatoid arthritis (damage is gradual) and type 1 diabetes (damage is gradual)?)

[nora-n]

Of course you can react badly to gluten without a positive biopsy.

Your doctor is talking about the official diagnosis, for which we get benefits here in some countries. that is why it has to be so strict, or anyone could claim they get sick from gluten and get the money. Here they get about 200 dollars a month if officially diagnosed.

Have you been eating enough gluten for the biopsy to show up positive? 0,3-0,5 g per kg per day?

The antigliadin IgG test menas something, and I found two interesting things:

Dr. Ford in NZ has a lot of info on that test, and that it means something.

google ford gluten.

the other thing is that scientists followed relatives of celiacs for many years, and did tests. Lo and behold, first the antigliadin tests would show up positive, then slowly the other tests, and the biopsy would go positive. I found it at pubmed.com.

nora

[PacMan]

Nora,

Thanks for your input. I had seen the Dr. Gluten website, but I will definitely read more today. And thanks for pointing me to pubmed.com.

Here in the US, I don't think we get benefits for being sick...other than (as I understand it), a higher risk for being uninsured because of a pre-existing condition once diagnosed with celiac.

I was on my normal diet for the biopsy, with the exception of a couple of days 3 weeks prior where I tried to cut out gluten as much as possible. But for at least 10 days prior to the biopsy, I was eating every bit of bread/flour thing I could.

I guess I'm just wondering where I'll be if the biopsy comes back negative. The gastroenterologist made it sound like if they couldn't get anything back that was positive, they were just going to label it "gastritis" or "IBS" or something like that. I'm having a hard time accepting that, especially since I've felt marginal-at-best, for a while now.

Does the body go through any sort of "detox" once you stop eating gluten?

[ravenwoodglass]

Since you have had the biopsy now would be the time to start the diet. You had positive blood work and the biopsy procedure does have false negatives for many reasons. Your body may give you the answer before you even go back for the biopsy results. Eat whole unprocessed foods to start with a minimum of gluten free specialty foods. There are some of who will go through a bit of withdrawl when we first stop gluten. It passes pretty quickly as long as we stay completely away from gluten.

It is a good idea to delete or avoid totally dairy products at first. The same area that creates the enzyme we need to digest dairy is the area that is damaged with celiac. Many of us are able to add dairy back in after we have healed. Do go ahead and get onto the diet and I hope you are feeling better soon.

[PacMan]

Ravenwood,

Thanks for your input...that's great information to have. I'm going to ask my doctor to refer me to a nutritionist...because, although I'm eating things without gluten, I don't know if I'm balancing my diet correctly or not.

I did get my biopsy result back today, and it came back negative. However, I noticed I've been very emotional in the past 24 hours--stressed, angry, anxious--I've got a stressful weekend coming up with a wedding I'm in (not my own), but for some reason, I still think that "normal" people handle things differently, and I'm on some extreme roller-coaster. I'm wondering if there's other things in my diet that might be upsetting my body chemistry.

[ravenwoodglass]

Ravenwood,

Thanks for your input...that's great information to have. I'm going to ask my doctor to refer me to a nutritionist...because, although I'm eating things without gluten, I don't know if I'm balancing my diet correctly or not.

I did get my biopsy result back today, and it came back negative. However, I noticed I've been very emotional in the past 24 hours--stressed, angry, anxious--I've got a stressful weekend coming up with a wedding I'm in (not my own), but for some reason, I still think that "normal" people handle things differently, and I'm on some extreme roller-coaster. I'm wondering if there's other things in my diet that might be upsetting my body chemistry.

A visit to a nutritionist might not be a bad idea. Many of them are not great at knowing a lot about the celiac diet but for info on a balanced diet they can be good. There are also many books that can be helpful. There are also a lot of knowledgable folks here so you might want to do another post asking for advice.

Give the diet some time and don't overwhelm yourself. Get some sublingual B12 and some magnesium as soon as you can, that will help a bit. Have fun at the wedding and if you need to ask any questions on dealing with the food issue at the reception do feel free to ask.

It takes some time to heal but I hope you are feeling better quickly.

[gfb1]

A visit to a nutritionist might not be a bad idea. Many of them are not great at knowing a lot about the celiac diet but for info on a balanced diet they can be good. [snip]

just an aside,

go to a REAL nutritionist. as in, a registered dietician (american dietetic association) or some other professional.

there are a lot of scams out there (because there is little certification of who can call them a nutritionist...)

if you see degrees/certificates/etc from these organizations -- run away.

# American Health Sciences University, CO

# National Institute for Nutritional Education, CO

#The Upledger Institute, FL

# The National Association of Nutritional Professionals

# American Association of Nutritional Consultants

[ravenwoodglass]

just an aside,

go to a REAL nutritionist. as in, a registered dietician (american dietetic association) or some other professional.

there are a lot of scams out there (because there is little certification of who can call them a nutritionist...)

if you see degrees/certificates/etc from these organizations -- run away.

# American Health Sciences University, CO

# National Institute for Nutritional Education, CO

#The Upledger Institute, FL

# The National Association of Nutritional Professionals

# American Association of Nutritional Consultants

Excellent point. If the referral comes through your doctor what you should be seeing is an RD. Don't just look one up in your phone book. Also if your MD writes a prescription for the visit your insurance may cover the cost.

[debmidge]

Here in the US, I don't think we get benefits for being sick...other than (as I understand it), a higher risk for being uninsured because of a pre-existing condition once diagnosed with celiac.

In USA there are no general benefits from govt. for being sick . The only program would be Social Security Insurance (SSI) and only if the illness is a disability which keeps you from working a full-time job and then you have to be pretty sick to qualify.

Many people get turned down for SSI on their first try and have to hire attorney to get on SSI disability and that doesn't always guarantee that you'll qualify. The reason for this is that in the past many people and physicans lied about existence and degree of disability, so now the govt. screens more harshly. The govt. will also require a physical done by their physicians every so many years to confirm and demonstrate that you will are "disabled" to their satisfaction.

As to health insurance, a disease or condition isn't necessarily a pre-existing condition if you take out new insurance. Each state regulates their own insurance rules and many use the "60-day rule." If you were without health insurance for more than 60 days and start a new policy, then any illness or condition you have is pre-existing, whether it's celiac disease or a heart condition or pregnancy.

Check with your individual State's Dept. of Insurance - Health Insurance regulations.

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D.M.