Doc Says No- Test Says Yes

[celiacmomma]

Hello-I'm a bit confused, I'm hoping to hear from some people to get their opinions.

My father was diagnosed with celiac disease. I had been ill for awhile- so drs tested me. I had vitamin d deficiancy, and the antibodies for celiac. dr did scope- diagnosis came back inflammatory bowel disease. dr said no to celiac that it was gluten allergies. not enough malabsorption and no damage to the villa. told me to try the diet-. The pa said it was celiac. I see the doc again this week- I'm just wondering if I should ask them to do another scope to see if there is any intestinal damage now.

Since the doc said it was not celiac i still have gluten. i just face the consequences if its not going to hurt me other than the "symptoms". I will go several days gluten free then have something with gluten in it- goes through the same pattern each time- immediate nausea, diarhea, sometimes bad cramping- but i may have something else with gluten in it a few hours later and only end up with oily stools, then if I continue that I will end up constipated. Then I'll go gluten free again.

I did have to have my thyroid removed this year due to hashimotos on both sides along with nodules. I've heard they could be related.

The weirdest thing is I have pain in the top of my hands where my hands and arms meet, not really the wrist unless I stretch my hands backwards, same thing with my feet. The pa said that it would prolly end up as rheumatoid arthritis later on.

Any comments?

[happygirl]

Can you provide a bit more info like:

Which blood tests indicated Celiac?

Which inflammatory bowel disease did he diagnose you with? Often Crohn's or Ulcerative Colitis

Did the doctor take multiple biopsies or only one?

[celiacmomma]

Can you provide a bit more info like:

Which blood tests indicated Celiac?

Which inflammatory bowel disease did he diagnose you with? Often Crohn's or Ulcerative Colitis

Did the doctor take multiple biopsies or only one?

It was a blood test that looked for antibodies and it took 10 days to come back. Sorry, that is all I know.

The dr said that I had lots of ulcers, but it was not crohn's or ulcerative colitis, just colitis and ulcers. I did have that drs report with the pathology and the pathology said inflammatory bowel disease- not ibs. At that point they were more concerned witht he grade severe esophagitis.

There were several biopsies from the ulcers.

[celiacmomma]

Can you provide a bit more info like:

Which blood tests indicated Celiac?

Which inflammatory bowel disease did he diagnose you with? Often Crohn's or Ulcerative Colitis

Did the doctor take multiple biopsies or only one?

I forgot to say thank you for answering this post.

[happygirl]

CM:

You are welcome. When you go to the doctor, request to get a copy of the bloodwork run. There are five tests that make up the full panel. Some positives are more likely to be Celiac than others.

I would certainly ask your doctor the questions you posed here, and ask about the conflicting information.

Regardless of if its Celiac or non-Celiac, your dietary response indicates that you are having a problem with gluten, correct?

[celiacmomma]

CM:

You are welcome. When you go to the doctor, request to get a copy of the bloodwork run. There are five tests that make up the full panel. Some positives are more likely to be Celiac than others.

I would certainly ask your doctor the questions you posed here, and ask about the conflicting information.

Regardless of if its Celiac or non-Celiac, your dietary response indicates that you are having a problem with gluten, correct?

yes, i have a problem with gluten. I get mouth sores sometimes also. I'll get the copies of the bloodwork. I can deal with the problems and still eat a sandwich if I want to, as long as I am not actually causing problems to my body. Go gluten allergies cause those same symptoms?

[happygirl]

Yes, gluten allergy or gluten intolerance can cause many of the same symptoms.

[Ursa Major]

Celiacmomma, those biopsies are very unreliable. The patches with blunted villi are easily missed. A positive biopsy will confirm celiac disease, but a negative one can never rule it out.

You have many symptoms of celiac disease. You get mouth sores, have a vitamin D deficiency, get diarrhea from gluten, as well as cramping and nausea.

Why does your doctor claim you don't have malabsorption? You have vitamin deficiencies, that shows that you do have malabsorption.

As far as I am concerned, you appear to have celiac disease and need to go 100% gluten-free permanently. Otherwise you risk getting other autoimmune diseases and cancer down the road.

The hashimotos could have been caused by celiac disease. Constipation and oily stools are celiac disease symptoms as well.

Another common symptom is joint pain. I say eliminate gluten, and your joint problems will likely go away.

[Ridgewalker]

Why does your doctor claim you don't have malabsorption? You have vitamin deficiencies, that shows that you do have malabsorption.

That was my first thought too- when combined with the other symptoms, the vitamin deficiency points straight to malabsorption. And of course, the oily stools certainly indicate malabsorption.

CM, you have several classic symptoms of Celiac. Add your dietary response, family history, and a probable positive blood test-- it sounds to me like you have Celiac.

[aikiducky]

The biopsies are notoriously difficult to interpret. If your doctor or the person looking at them in the lab isn't very experienced with celiac, they might not have seen the damage. The criteria for celiac used to be that your intestine had been damaged so much that the villi are completely gone. Nowadays a lot of people get a biopsy before the disease has gone that far, and the doctor needs to look at more subtle changes in the intestine that indicate beginning celiac. Many doctors are not aware of this yet.

You might be able to get a second opinion of the same biopsies if they have been kept.

Another option is to continue eating gluten until you have damaged your intestine so far that it's clearly seen in a biopsy. If you do continue eating gluten I really think you need to be periodically tested again.

Personally I think that with family history and all the symptoms you're having, it's likely that you have beginning celiac that will eventually do more damage if you continue eating gluten.

Going gluten free is a hassle in the beginning and it continues being difficult at times (I'm three years gluten free now). But feeling healthier makes it soooo worth it.

Pauliina

[ravenwoodglass]

I don't have much to add other than the opinion that your doctor is an idiot or woefully ignorant as far as celiac is concerned. He does not appear to have really listened to your symptoms, your dietary results and the results of the challenges you have done. You need to.

[hathor]

Do you really need to see that damage has been done to change your diet? Doesn't it make more sense to try to prevent the damage? It is like someone not willing to stop smoking until lung cancer is diagnosed or stop drinking until there is cirrhosis.

You have the antibodies and you have a noticeable reaction to gluten, plus a family history of the disease. It could be that the biopsy samples missed where you are injured or were not properly analyzed. Or it could be that the damage is now in the process of happening or gluten causes problems to your body elsewhere.

I think what the doctor said, in his inexact way, was that there was no observable damage to your villa YET, and so he was not willing to put the "celiac" label on there. He came up with another label and told you not to eat gluten.

I don't think you should get hung up on labels and should do what both your body and your doctor indicate you should do.

[Ursa Major]

Go gluten allergies cause those same symptoms?

I don't believe there is such a thing as a gluten allergy. It is an intolerance that causes an immune reaction.

And as said before, if you keep eating gluten you WILL do damage to your body.

[celiacmomma]

Celiacmomma, those biopsies are very unreliable. The patches with blunted villi are easily missed. A positive biopsy will confirm celiac disease, but a negative one can never rule it out.

You have many symptoms of celiac disease. You get mouth sores, have a vitamin D deficiency, get diarrhea from gluten, as well as cramping and nausea.

Why does your doctor claim you don't have malabsorption? You have vitamin deficiencies, that shows that you do have malabsorption.

As far as I am concerned, you appear to have celiac disease and need to go 100% gluten-free permanently. Otherwise you risk getting other autoimmune diseases and cancer down the road.

The hashimotos could have been caused by celiac disease. Constipation and oily stools are celiac disease symptoms as well.

Another common symptom is joint pain. I say eliminate gluten, and your joint problems will likely go away.

Thank you so much for your response. I am about 50 lbs over weight- I think that is why he doesn't believe the malabsorption- says I could just not be having enough dairy.

[celiacmomma]

That was my first thought too- when combined with the other symptoms, the vitamin deficiency points straight to malabsorption. And of course, the oily stools certainly indicate malabsorption.

CM, you have several classic symptoms of Celiac. Add your dietary response, family history, and a probable positive blood test-- it sounds to me like you have Celiac.

Thank you for the information.

[celiacmomma]

Do you really need to see that damage has been done to change your diet? Doesn't it make more sense to try to prevent the damage? It is like someone not willing to stop smoking until lung cancer is diagnosed or stop drinking until there is cirrhosis.

You have the antibodies and you have a noticeable reaction to gluten, plus a family history of the disease. It could be that the biopsy samples missed where you are injured or were not properly analyzed. Or it could be that the damage is now in the process of happening or gluten causes problems to your body elsewhere.

I think what the doctor said, in his inexact way, was that there was no observable damage to your villa YET, and so he was not willing to put the "celiac" label on there. He came up with another label and told you not to eat gluten.

I don't think you should get hung up on labels and should do what both your body and your doctor indicate you should do.

Thank you for your post. If I am only intolerant, and it does not actually do any damage, then I really don't know that I want to be entirely gluten free. I guess I may need to be though.

[buffettbride]

Thank you so much for your response. I am about 50 lbs over weight- I think that is why he doesn't believe the malabsorption- says I could just not be having enough dairy.

My daughter was smack-dab in the middle of the growth/weight charts for her age, and she was astronomically diagnosed as Celiac through the blood tests and biopsy.

It probably isn't the dairy as the whole problem, though. Here's what might be happening:

1. Villi are blunted due to Celiac Disease
   
2. Cannot absorb calcium/vit d because of blunting
   
3. You are overweight so Dr. ignores blood/endo indications of Celiac
   
4. Drs. tend to be kind of dumb anyway so...
   
5. Why not test the dietary response?
   

I can SO understand not wanting to give up gluten forever if you're not "truly Celiac" but when I think of that in terms of me as a parent of a Celiac, I can't imagine continuing to poison her if I know it makes her feel awful--and could ultimately kill her.

That's just my take as a mom.

[hathor]

I guess I have a problem with your mention of "only intolerance." Are you willing to bet that lasting damage will NOT be done? Isn't prevention better than cure?

A couple articles for you:

https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html

Open Original Shared Link

If you are bound and determined to have a positive biopsy before changing anything, when you admit eating gluten makes you feel sick, you can always get a second opinion on the original endoscopy. Or is it too late for that?

I know I'm coming across really hard and it is a difficult thing to commit to gluten-free for life. I just couldn't sit by and do what I think is endangering your health without saying something.

Good luck to you whatever you decide.

[katetastic619]

Wanted to add a few things...

It could be possible that the ulcerations your MD was seeing during the endoscopy are the early stages of damage to the villi in your small intestine. Just a thought. It takes time for villi to become damaged. Just because they are not yet, and the doctor seems to believe there is not absorption does not mean you therefore do NOT have celiac disease.

In a sense you've already had a second opinion from the physician's assistant (a highly trained medical professional) who has seen all the same results of your tests and believes you have celiac disease. Why not try going gluten-free for a longer period of time and see if there is a big difference in your health?

The sad thing is, you can't always accept a doc's diagnosis. Doctors are not God. They are infallible.

My pediatrician, whom I saw until I was 21, thought I was a hypochondriac. I changed doctors and STILL had to push for thyroid testing, since through my own research I was positive I had a thyroid condition. sure enough, blood tests showed levels almost off the charts. I've had to push for a lot with my current doc, and trust my own body and analyze my own symptoms...do research. And she's one of the good one's. Very intelligent, kind, and open-minded.

I guess the choice is yours, whether you want to live with these symptoms or not, and the possibility that you have celiac disease. Like other's have mentioned, if you are celiac and continue to eat gluten, you will leave your self open to scarier health problems down the road. You've already noticed that gluten seems to make you sick and affect you with gi symptoms. Is it worth continuing to eat it and deal with nausea, diarrhea, constipation, etc.?

I wish you the best of luck getting to the bottom of your health issues and healing in the future!