Celiac syndrome is there such a thing?

[Andrea Rodgers]

I was told when I was born I had celiac syndrome. I was mind boggled and did not care ate wheat for 29 years then was diagnosed with Glutensensitivity. Now my knees are swollen and I have fluid on them this has been this way with for 2 months!

[trents]

Welcome to the forum, Andrea!

We need some clarification here.

When you say you were told when you were born you had celiac syndrome, I assume you mean that sometime after your were born you were told that you have had celiac syndrome from birth. Otherwise, I would find it remarkable that you understood and remembered what you were told at the time of your birth. You were truly a child prodigy! 

The term, "celiac syndrome" is a new one to me but I assume whoever told you this that they were using the term to mean the same thing as "celiac disease," which is the conventional terminology.

What symptoms besides fluid on the knees do you have that would suggest you have gluten sensitivity? Have you had any formal testing done for celiac disease, such as blood antibody analysis or an endoscopy/biopsy? There currently is no test for gluten sensitivity but if you have symptoms and celiac disease is ruled out through either or both of the two testing methods I mentioned then it is reasonable to conclude you have gluten sensitivity.

I have not heard of fluid-filled, swollen knees as being a symptom of either celiac disease or gluten sensitivity. But, we are discovering new expressions of gluten related diseases all the time.

[Andrea Rodgers]

2 minutes ago, trents said:

Welcome to the forum, Andrea!

We need some clarification here.

When you say you were told when you were born you had celiac syndrome, I assume you mean that sometime after your were born you were told that you have had celiac syndrome from birth. Otherwise, I would find it remarkable that you understood and remembered what you were told at the time of your birth. You were truly a child prodigy! 

The term, "celiac syndrome" is a new one to me but I assume whoever told you this that they were using the term to mean the same thing as "celiac disease," which is the conventional terminology.

What symptoms besides fluid on the knees do you have that would suggest you have gluten sensitivity? Have you had any formal testing done for celiac disease, such as blood antibody analysis or an endoscopy/biopsy? There currently is no test for gluten sensitivity but if you have symptoms and celiac disease is ruled out through either or both of the two testing methods I mentioned then it is reasonable to conclude you have gluten sensitivity.

I have not heard of fluid-filled, swollen knees as being a symptom of either celiac disease or gluten sensitivity. But, we are discovering new expressions of gluten related diseases all the time.

The doctors don't know why Thier swollen I was a baby not when I was born and Dr. Osborne tested m me about 7 yrs ago for both gluten sensitivity and celiacs so I thought he was mistaken but hee claims I'm Glutensensitive.

All I know is I was allergic to rye and had celiac sydrome, I have lots of issues ! But I'm only allergic to gluten not as many as some people ! ibs,hypothyroidism

[trents]

Are you creating your posts from a cell phone? They are hard to understand.

What kind of tests did Dr. Osborne run?

Celiac disease (celiac syndrome?) is not an allergy. It is an autoimmune disease. It engages the immune system through an entirely different pathway than an allergy would. I'm not sure how they are classifying gluten sensitivity and though the symptoms of gluten sensitivity are much the same as celiac disease, exactly how it engages the immune system is not so well known. Anyway, the treatment for both is the same, namely, total avoidance of gluten.

Having said that, it is possible to have an allergy to gluten. It would be helpful if you would describe how Dr. Osborne tested you.

What is it that we can help you with?

Edited June 30, 2021 by trents

[Andrea Rodgers]

All he did was blood work and look at my scalp ! Then he said I'm Glutensensitive my friend has celiac shoes in and out of hospital 60slot! I know what celiacs is I went years suffering from malnutrition when I was older!

[trents]

Specifically, what blood work did he do? What were the names of the tests done from the blood work? Do you have a record of what were involved in the bloodwork? If so, could you post it? If he was looking at your scalp it sounds like Dr. Osborne may have been a naturopathic physician.

I asked this above but you did not answer, how can we help you?

[Andrea Rodgers]

He's a very wealthy Dr. No I don't have records !

[trents]

If you really want to fond out if you have celiac disease vs. gluten sensitivity, you need to have blood tests done such as described in this article: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/  The most important of those is the TTG-IGA. Some doctors will only order that one blood test when checking for celiac disease.

If the blood tests are negative and you are still having health-related reactions to gluten, then you should get an endoscopy (upper GI) with a biopsy of the small bowel lining. If the small bowel lining doesn't show celiac damage then you may conclude you have non celiac gluten sensitivity (NCGS). And it is important that leading up to either test you have been consuming regular amounts of gluten daily.

If you original purpose in posting was to ask if "Gluten Syndrome" is a real thing, we are no familiar with that terminology. But without more explanation from Dr. Osborne we are not sure whether he was referring to celiac disease or non celiac gluten sensitivity . . . or even something else which may not be recognized by the medical community at large.

 

[Andrea Rodgers]

Thankyou I'm an advocate for celiacs disease because I care !