n1c0le

I had these symptoms when I was very ill from long-undiagnosed celiac.

I do not have any allergies. I was tested repeatedly. It was an inflammatory response in me from gluten.

I can get a pounding heart, rashes, red skin, parasthesia, etc.-- from an accidental glutening.

It is rare I am "hit", but it happened just last week, and when I was up half the night with a pounding heart and burning skin sensations --it was my first clue what was to come.

Thanks so much IrishHeart...as if I needed any more evidence that I have Celiac... :X

Thanks everyone! Wow, so many symptoms at young ages. I too went to physical therapy for 4 months for suspected symmetrical knee sprains. Then my neuropathy kicked in and that's what lead me back to what doctors have suggested to me many times - celiac!

Hi,

It's pretty simple really. If you go gluten-free for 6 months and your symptoms start to improve, then you have a problem with gluten. Whether you call it celiac or NCGI (non-celiac gluten intolerance) is not really important IMHO. The main point is to feel better right?

Having autoimmune symptoms that no tests can identify the cause of is something other people have reported here too. Celiac can mimic many other conditions because it can affect the whole body and there are many varied symptoms that can occur. Doctors are sometimes confused by celiac and test people for all kinds of things before finally identifying celiac. The tricky things is, the celiac antibody tests can't prove that you don't have celiac, they can only prove you do have celiac. So if the tests are negative, that doesn't prove you don't have celiac.

If you don't want to do the endoscopy that's fine. But the smart thing it is to go ahead and do the gluten-free diet for 6 months, and write down what you eat each day and how you feel. Your body is perfectly capable of telling you how it reacts to foods without a medical degree.

Celiac can cause malabsorption of nutrients, (vitamins and minerals etc). That can cause lots of symptoms. Sailors use to get various diseases from lack of vitamins going on voyages across the big water many years ago. They have names for them like beri-beri, pelagra, and others. It didn't take them decades to develop those conditions though. So your doctor is wrong saying that nuerological symtpoms can't occur fairly quickly. The Wiki link below talks about Beri-beri cases developing in 9 months at sea with a bad diet. That's 9 months in non-celiacs that they developed severe symptoms. 25 dead is pretty severe.


Beri-beri on wiki
In 1883, Kanehiro learned of a very high incidence of beriberi among cadets on a training mission from Japan to Hawaii, via New Zealand and South America that lasted more than 9 months, resulting 376 cases of sickness and 25 deaths on a ship of 169 men. With the support of the Japanese Navy, he conducted an experiment in which another ship was deployed on the same route, except that its crew was fed a diet of meat, fish, barley, rice, and beans. At the end of the voyage, this crew had suffered only 14 cases of beriberi and no deaths. This convinced Kanehiro and the Japanese Navy that diet was the cause.^[7]


http://wiki.answers....ack_of_vitamins


What are the diseases caused by lack of vitamins?
In: Health, Conditions and Diseases, Eyes and Vision Disorders, Vitamins and Supplements, Trinidad and Tobago [Edit categories] Answer: It depends on the type of vitamin. For example, lack of vitamin A can cause night blindness, lack of vitamin B1 can cause beriberi, lack of B3 can cause Pellagra, lack of vitamin C can cause scurvy, and lack of vitamin D can cause rickets in children and osteoporosis.

Thanks so much for your response. I feel very strongly that Celiac is the likely cause of all of this - I've got a lot to point to that supports my theory - I don't think I could ask for MORE evidence. However, before I commit to gluten-free I want to do everything I can to get an official diagnosis. I am a pescetarian (eat fish but not other meats), suspected lactose intolerant (thinking now this might just be the gluten in the first place) and have allergic reactions to many fruits and nuts (thinking celiac may even be emphasizing these allergies). I don't know how cutting out gluten AS WELL would work for me - I might have to work some chicken into my diet or something. In any event, I think I'd need a dietician and don't want to go through all of this unless it's official - OR unless they run out of evidence / tests - then I'm 100% going gluten free immediately!!!!
Thanks again!!!

Hey guys,

So here's the update.
The doctor didn't feel that an endoscopy was necessary or would be helpful. He performed blood work - since new symptoms have developed and i haven't had blood work in over a year. We got some results immediately, which were perfectly normal. We're getting the rest by Friday.
He said he doesn't think it's Celiac, although he said it's still possible. He said neurological symptoms would typically develop at a much later stage of untreated Celiac - in other words, not at age 23. He said it makes sense that many doctors including himself have suspected autoimmune, because my symptoms match, but he says an autoimmune like lupus or RA would have showed itself on a blood test by now. He said this is a longterm issue because I've experienced symptoms in 3-4 body systems for several years, and that we know we're not waiting for this thing to develop - it's already here.
He said there's a possibility that we're dealing with something bizarre. He also said he wouldn't entertain the idea that it was psychosomatic until we'd tried everything in our power to come up with a definitive answer because I require a diagnosis. He stressed that I need a diagnosis several times.
The blood work he's running is more than a full panel - it is beyond. He said he's doing one test that shows if there's inflammation in the body AT ALL - not where it is of course, but any inflammation will show.

Any thoughts guys? I'm back to waiting another week although my doctor really proved himself as a partner in solving this mystery with me. He gave me hope that this can be figured out and treated. But I'm scared of the big autoimmune question mark.

I wonder if the blood panels for celiac which were done on you were the full panel. Often the full panel is not done & that can certainly cause a false negative. here is the full celiac panel:
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA


The DGP test was added recently to the full panel.


You can ask your doc to redo the test to include the entire celiac panel tomorrow when you are in for the endoscopy & the doc should take at least 4 -- 5 is better biopsies during the endoscopy.


Yes, it sounds like you may very well be celiac.
I hope you get the dx you are looking for. But whatever the results; you don't need anyone's permission to go gluten free for 6 months & see how you feel. Then you can challenge by eating gluten again. That will give you the truest answer of all.
Let us know how it goes tomorrow.

Thanks for your response! If my biopsy comes back negative I will discuss options with my doctor. He is amazing and I know he'll give me the right advice, and tell me to try gluten-free once we've tried everything to get a DX. I think the blood test was thorough because I trust him because he's a truly great doctor, but I can't prove it. I'll make a point of this at our meeting tomorrow!
Will let you know how it goes!