Upper Gi Endoscopy Negative, Could I Still Be Celiac?

[leethinker]

Hey all,

I've posted before with my various pains and problems, and have meanwhile gotten an upper GI endoscopy. They found no cancer, nothing else organic. The doctor said she thinks it is definitely a food allergy/intolerance, etc., but doesn't think it is celiac. She supposedly looked the small intestine and said the little villi were all fine.

This is the problem: after having the endoscopy, I decided to just try to find the food culprit myself. So I decided to stop eating gluten for a week. Well,,,,, it is a miracle because only a couple days later, ALL (yes, ALL) of my symptoms disappeared! Then after a week I started eating gluten again. Guess what? My symptoms came back.

So, I'm wondering this: The doctor said she thinks perhaps it could be fructose or lactose intolerance and wants me to do a breath test for each. Now, if my symptoms disappear after eliminating gluten (but NOT eliminating milk products or fruit/fructose), shouldn't I be getting a diagnosis of celiac?

Don't get me wrong, I certainly do not WANT to be celiac. But I really want to know what is wrong with me because I really cannot handle this anymore. I feel like an old lady (aches and pains, bloating, feeling sluggish and tired, depressed, constipation, etc...)... I'm 36. This all started when I was pregnant with my second child, who is now 2!

Can anyone tell me if it is possible to still have celiac even despite negative biopsy?

Thanks!

[Lisa]

First of all, I think that most of us thought of Celiac as a welcome diagnosis. A simple (well, not so simple in the beginning) dietary change is it's RX.

You most certainly can have Celiac, a gluten intolerance or a gluten allergy. You can rule Celiac in, but testing cannot rule it out. There are no guaranteed diagnosis other than a positive dietary response.

Give the diet a full 100% for about a month and see how you feel. But, I believe you already have found your answer.

[ShayFL]

Did your doctor just do a "visual"??? Did she take samples to be sent to the lab for analysis? Samples from multiple spots? If she didnt, then she didnt do her job right.

Have you had a complete Celiac panel?

Genetic testing?

You can accept your doctor saying that she doesnt think it is Celiac. Or you can do what you have done. The gluten-free diet.

POS. response to a gluten-free diet is the only accurate way to diagnose.

The scary thing is the people who have "believed" their doctors and went on eating gluten only to develop horrible auto-immune diseases before they FINALLY have enough damage in their intestines to get the "gold standard" diagnosis. Some get dx Celiac when they are being treated for lymphoma (related to untreated Celiac).

You have your answer. If you ever decide you want to eat gluten again, you should at the very least have Genetic testing to see if you have Celiac genes.

[KristaleeJane]

WOW

I am shocked that your doctor did an upper GI to check for celiac. That is absolutly not the way to go about testing for celiac unfortuanlty. Before I got diagnosed I was extremly sick, no one could figure out what was wrong with me, and my doc that it could be an ulcer, we did the upper gi and she said no all your results came back normal, your fine its probably IBS.

In order to check the Villa a biopsy needs to be done, because they look at the samples of your villa under a microscope, to the eye my villa looked normal to, but under a microscope I had considerable damage, which confirmed my diagnosis of celiac. I also have very high positive Iga bloodwork.

Now I am no doctor so I may be wrong but going by my experience an Upper Gi cannot diagnose celaic. It is a biopsy which is needed.

Good luck , any more questions, feel free to IM me

Krista

[Lisa]

an upper GI endoscopy.

Thanks!

I believe 'leethinker' was refering to an endoscopy exam, rather than an Upper GI Series.

[ShayFL]

But no biopsies taken????

[mymagicalchild]

The doctor's statement that she didn't think it was Celiac disease but rather a food allergy made me scratch my head. I consulted my "Prescriptions for Nutritional Healing" book and under "Celiac Disease" it says:

"Celiac disease (also called celiac sprue) is a chronic digestive disorder that is caused by a hereditary

intolerance to gluten...."

Is this an incorrect definition?

I have been under the impression that gluten allergy causes the damage to the intestinal lining that then becomes Celiac disease. Which is what the above definition says.

If you are allergic (or intolerant) to gluten and continue to eat it, your doctor will no doubt soon be able to make a Celiac diagnosis. You are incredibly lucky that your symptoms started all at once during your recent pregnancy and that you are old enough to realize the importance of paying attention.

Smart...Lucky...Lady!

[ShayFL]

It is a correct statement, but it isnt complete. Celiac is an auto-immune disease that is triggered by gluten.

It is common for auto-immune diseases to show up after a trauma, major life stress (childbirth, death of a loved one, divorce, etc.) or an infection.

[leethinker]

Hi everyone,

First of all, thank you all soooo much for all your thoughtful responses! I really appreciate it a lot. Particularly because it seems the medical world is oblivious to this condition! What's up with that???

I *think* I had an endoscopy exam done, but I'm having to translate from German because I live in Germany and everything they've said I've had to hear in German. I'm American but I live here (I was a student abroad and ended up staying...). Anyway, they stick a tube down your throat (I was sedated) and then take pictures. They did take samples and sent it to the lab.

However, the endoscopy was ordered not specifically to check for Celiac, but rather just to see what was going on in there. I mentioned to the specialist that I felt it might be gluten and then she said she'd look at the small intestine too.

Call me paranoid, but I personally think she did NOT do all the tests/biopsies she should have done. She actually said, "You don't want it to be gluten. It's really hard to keep up the diet, it's expensive, etc..." Well, what I want is to know what is wrong with me!!

One of you said the best diagnosis is a positive response to a gluten-free diet. Well, I definitely have that! I would just like to have certainty so that I don't constantly doubt myself! Sometimes I think, "well, maybe it's just because your an anxious person and you're causing your digestive problems". I do have a 4-yr old and a 2-yr. old, I study part-time, and have my own business, so maybe that's why I'm always tired!!

Then the other part of me thinks that is nonsense... I get enough sleep - 8 hours, I am thin, active, I eat healthy, I manage my life just fine. And how could it be just in my head that my symptoms completely go away after eliminating gluten??

Anyway, I don't quite know what to do now... Should I talk frankly with my family doc and force him to do the tests on me??? I like my family doc a lot but even he thinks that my problems are coming from either IBS or anxiety or both.

Having said that,,,, my IgE (I think that's what it is...) was 650 when it should be under 100. EVen he says I definitely have a food allergy, but it is just impossible to test to find out what it is...??

Sorry for rambling, but I'm really frustrated right now!!

Thanks again for your help!

[mftnchn]

The doctor's statement that she didn't think it was Celiac disease but rather a food allergy made me scratch my head. I consulted my "Prescriptions for Nutritional Healing" book and under "Celiac Disease" it says:

"Celiac disease (also called celiac sprue) is a chronic digestive disorder that is caused by a hereditary

intolerance to gluten...."

Is this an incorrect definition?

I have been under the impression that gluten allergy causes the damage to the intestinal lining that then becomes Celiac disease. Which is what the above definition says.

If you are allergic (or intolerant) to gluten and continue to eat it, your doctor will no doubt soon be able to make a Celiac diagnosis. You are incredibly lucky that your symptoms started all at once during your recent pregnancy and that you are old enough to realize the importance of paying attention.

Smart...Lucky...Lady!

The body's response to gluten in celiac and in a wheat allergy is quite a different mechanism, so no, they are not the same thing. The treatment is the same though, stay away from it.

[mftnchn]

Your experience is a common one. Biopsies can be false negative even when they are done well. Your dietary response is clear however.

Do you need further diagnosis?

You could do an Enterolab test to get some more information, including a gene test. Positive celiac genes and positive dietary response are highly suggestive, especially with elevated ttg.

For many of us, we don't fit into the "gold standard" for many reasons including poor testing. However, ultimately we have researched and experimented and figured it out for ourselves. Its not dependent on a prescription so you don't need your doctor.....

However it is nice to have a practioner take it seriously and moniter for other autoimmune disease, deficiencies, etc.

[leethinker]

You're right, really. I don't really need an "official" diagnosis since it is clear to me that my symptoms go on a gluten-free diet, and return after eating gluten.

But you're also right that getting a diagnosis would help ensure someone - besides myself who has no

medical qualifications - could be there to monitor my health, knowing that I have celiac.. Doctors tend to disregard anything a patient says. If I come to a doctor and say, "I have celiac disease", he/she will want to see the documents proving it... Of course I have none.

Also, I have the feeling my family members (not my husband and kids, but my relatives and in-laws, as well as friends, etc.) would be more supportive of this kind of diet if I had a diagnosis. I'd hate to constantly be coming up against resistance just for trying to take care of myself. Does that make sense??

Anyway, I appreciate your help! I am definitely going to continue to eat a gluten-free diet, if for anything, because it makes me feel better!!

[mymagicalchild]

The other side of the coin to not having a medical diagnosis of celiac disease is: you have no preexisting condition diagnosed that must be divulged (so coverage can be excluded) on any future health insurance applications.

You've determined the cause of your problem by the cure you've found. You're your own medical doctor!