Is My Doctor An Idiot? Gluten Intolerance Vs Celiac

[Hulda]

I am doing so so great on gluten free (plus egg, soja and dairy free) diet. I feel like I am returning to being me after at least 10 years in depression, fog and pain.

That it why I am confident I have Celiacs, even though my doctor doesn

[mushroom]

Congratulations on your self-diagnosis, Hulda. Yes, doctors can be useful when they know what they are doing and you have confidence in them, but when they don't know what they are doing and you have reason to have no confidence in them they are useless I would say your doctor is the latter kind of doctor when it comes to gluten. What you are describing, though, is not an allergy to gluten, it is an autoimmune response to gluten that makes you so sick. And a blood test is worthless if you have not been eating gluten, because without the gluten the body is not stimulated to produce the antibodies that the blood test measures. She should at least know that

That being said, there is such a thing as non-celiac gluten intolerance which produces much the same symptoms as celiac disease, but you don't test positive on the celiac tests. That does not mean it is less serious than celiac disease, it just means that they can't put a label on it. And doctors do like to label things - in fact their insurance billing codes require that they put a diagnostic label on you before you leave the office. The most usual label doctors use is Irritable Bowel Syndrome (IBS), which isn't really a diagnosis but just a description of your symptoms, but they DO have to put something in the diagnostic code box If they don't use that diagnosis, then they use hypochondriasis or depression, and say it is all in your head, because gluten makes you feel depressed (it causes neurological symptoms as well as GI symptoms).

You have all the symptoms of gluten intolerance; whether or not it is celiac disease we will not know unless you are willing to commit to eating gluten for two months, the equivalent of 3 to 4 slices of bread each day, to reactivate the antibodies (and at the same time redamage your small intestine from all the healing it has done in the absence of gluten).

I am glad you are doing so well on the diet. Prove to your hub that doctors are not gods, they do not know everything, and that patients can know more than their doctors. If you have any specific questions on where to go from here (read the board, by the way, and celiac.com, there is oodles of useful information there), then fire away with any questions you have.

So we are all trying to figure out how to make the doctors better informed about gluten. In the meantime, the poor patients such as yourself suffer from their ignorance.

If the diagnosis from a DOCTOR is not important to you, do as you are doing and avoid gluten entirely, and you should find yourself improving in leaps and bounds.

Again, congrats on your gluten free status and here's to health

[laura4669]

I agree with everything "mushroom" said in the previous post, and I will add some of my own story.

I am gluten intolerant, but not technically not celiac. I tested negative on the blood test and I also had a negative endoscopy. I did however, have a positive stool analysis three times showing extremely high levels of inflammation in my gut due to gluten. I had almost all of the exact same symptoms that you did, and for years was told I was "just fine" when I went to various doctors trying to figure out what was going on. I was beginning to think I was crazy! I was given Prozac and Valium, because I don't think the docs knew what to do. I don't blame them though, I think they wanted to help, but they are not taught what they need to know to heal people in medical school. They are taught to prescribe drugs.

There is new thinking with some docs that says that there is really no difference between being "celiac" and "gluten intolerant", since both conditions are caused by an autoimmune response to gluten. In celiacs, the part of the body effected is the intestines, where as in gluten intolerant people, the parts of the body effected could be the intestines (but not always), or it could be the brain, joints, etc. I tend to agree with this thinking.

I am glad you are feeling better on a gluten free diet, and it seems like you don't need a doc to tell you what is wrong, since you figured it out on your own!

[etta694]

That being said, there is such a thing as non-celiac gluten intolerance which produces much the same symptoms as celiac disease, but you don't test positive on the celiac tests.

I need to pick more brains about this. Is this a logical thought here... Celiac causes malabsorption and thus mega symptoms depending on the area of the gut that is affected. If a person has been suffering from anemia, vitamin deficiencies, food issues such as an inability to digest dairy.. does that imply villi atrophy? Wouldn't that suggest Celiac even if they can't find it with biopsy?

[mushroom]

If a person has been suffering from anemia, vitamin deficiencies, food issues such as an inability to digest dairy.. does that imply villi atrophy? Wouldn't that suggest Celiac even if they can't find it with biopsy?

That's the way the pages in my book read. If you suddenly become lactose intolerant, go gluten free and after a while can digest lactose again, it would certainly suggest that there has been damage to the villi whether they found it or not

[ruca55]

Mushroom-

Can I ask what the book is that you are referring to?

Thanks

[mushroom]

Mushroom-

Can I ask what the book is that you are referring to?

Thanks

Sorry, no citation for that I was referring to the fictional pages of the book in my head . They have no page numbers.

[sherrylynn]

makes since to me. mushroom I like that fictional book of yours.

[sb2178]

There's also some speculation that the ability to absorb nutrients goes first, with the villi destruction being more of an affect than a cause. So, to draw that out(oversimplified):

1) your body freaks out at gluten (eek!)

2) your intestines stop absorbing nutrients (uh-oh)

3) your body runs out of nutrients (hello, deficiencies!)

4) your body cannot heal damage, and your villi fade away under the stress of autoimmune attacks (goodbye, villi...)

I compare it to diagnosing stage four cancer. Part of the reason it takes so long to diagnosis is that the primary marker only shows up when someone is very sick.

[ruca55]

I like that book!

sb2178- thank you for that great explanation!

[gf-soph]

a) You have peptic ulcers that didn

[nora-n]

I think there is more on gluten sensitivity here: Open Original Shared Link and there are books about gluten sensitivity too. And, non-celiac gluten sensitivity is described.

[IvorBarry]

I am gluten intolerant, but not technically not celiac. I tested negative on the blood test and I also had a negative endoscopy.

I had almost all of the exact same symptoms that you did, and for years was told I was "just fine" when I went to various doctors trying to figure out what was going on. I was beginning to think I was crazy! I was given Prozac and Valium, because I don't think the docs knew what to do.

I had a very similar experience starting in 2005. One day, out of the blue, I got sick after eating a bread roll. I'd eaten them all my life and all of a sudden I was sick. My friends said I turned pale and became glassy eyed. I thought I might need sugar or something and so ate a cookie. It made things worse! I was in a panic!

After a few days of eating something and being sick almost immediately afterward I started keeping a food diary.

The turning point was when I got sick after eating Rice Crispies.

At first I thought it was the milk, so I bought soy milk to use instead. The next day I tried Rice Crispies again and was immediately sick after eating them. That's when I narrowed it down to 2 possibilities: rice or malt. After Googling what "malt" was, I was shocked to discover this thing called gluten. (I was totally clueless about food before this. I knew nothing!)

Going back over my food diary I found that any time I ate something with gluten I was sick within minutes. So I went to my doctor with my data in hand.

My PCP tested me for celiac disease. When the blood test came back negative he declared that I was imagining these symptoms and needed to be put on Valium for 6 months. I was just worked up. That's what my problem was. I had an over active imagination.

I decided to get a 2nd opinion and scheduled a visit to an allergist.

Within 10 minutes of talking with the allergist he told me I was gluten intolerant. He had met people like me before. I asked how this could be? I related the test information from my PCP. He told me that my PCP didn't understand the difference between being a Celiac and being gluten intolerant. He also told me to thank my lucky stars that I wasn't a Celiac, for my gut wasn't damaged! He thinks that I have just lost the enzyme needed to break down gluten.

Yes, I had lots of annoying symptoms which included diarrhea, gas, bloating, mental fog, stiff leg muscles, and an ache in my stomach right after eating gluten, but these would all go away if I ate gluten free! So he gave me a list of things to avoid and sent me on my way. To him it was as simple as that and he also stressed that I wasn't imagining this! It was very real.

I can't tell you how much better that made me feel!

The current working theory of my illness is that because I can't digest gluten, it just sits in my gut, untouched, if I eat it. Then, by reverse osmosis, it sucks up electrolytes out of my blood until it passes out of my gut. This might be the cause of the mental fog and the stiff leg muscles. I did find that if I drank a LOT of liquids after accidentally eating gluten, I could get the stomach ache and the mental fog to go away.

After meeting with the allergist I got a new PCP who sent me to a gastroenterologist for a colonoscopy. In 2005 the gastroenterologist and the new PCP told me at the time they had never seen a patient who was just gluten intolerant. They'd met many Celiacs but never anyone like me. Today they've both told me they now have several patients just like me.

So don't let your doctor tell you you're crazy. There is a difference between being a Celiac and being gluten intolerant. They both do better when gluten is gone from their diets, but the tests for Celiac disease will not detect gluten intolerance. You can be gluten intolerant and not be a Celiac!

Also, my new PCP said to me, "If you feel better eating gluten free, by all means, do it! You don't need to eat gluten to be healthy!"