Suspicion...Need Advice

[Dizzypainbody]

Hi Everyone,

     I'm new here and have been suspecting that I have celiac after not finding answers for my symptoms. Can anyone who has celiac tell me if my symptoms are similar to theirs and if I should put effort into testing? My symptoms, of many years, are:

*Chronic Vertigo/ Nystagmus                                                                                                                                                      *Anemia                                                                                                                                                                                    *Sacroillitis (joint pain)                                                                                                                                                              *Neuropathy in legs and feet                                                                                                                                                          *Serious Fatigue                                                                                                                                                                               *Anxiety, past panic attacks                                                                                                                                                           *frequent rashes                                                                                                                                                                             *Hairloss                                                                                                                                                                                          *Dental Loss

It's so difficult having these symptoms and not knowing the cause, does anyone think this could be celiac?

 

[kareng]

23 minutes ago, Dizzypainbody said:

Hi Everyone,

     I'm new here and have been suspecting that I have celiac after not finding answers for my symptoms. Can anyone who has celiac tell me if my symptoms are similar to theirs and if I should put effort into testing? My symptoms, of many years, are:

*Chronic Vertigo/ Nystagmus                                                                                                                                                      *Anemia                                                                                                                                                                                    *Sacroillitis (joint pain)                                                                                                                                                              *Neuropathy in legs and feet                                                                                                                                                          *Serious Fatigue                                                                                                                                                                               *Anxiety, past panic attacks                                                                                                                                                           *frequent rashes                                                                                                                                                                             *Hairloss                                                                                                                                                                                          *Dental Loss

It's so difficult having these symptoms and not knowing the cause, does anyone think this could be celiac?

 

Open Original Shared Link

 

 

[Evelyne555]

Hi, 

All the symptoms and diseases you describe are known symptoms and diseases caused by celiac disease, so you shoud be tested as soon as possible. I have had some of these myself, while some others completely different from you, but the range of possible symptoms and diseases is very large, celiac disease is "typically atypical", to quote doctors and researchers. Check these two pages from the Canadian Celiac Association,   Open Original Shared Link and Open Original Shared Link : you will see for yourself that your symptoms are there, including neurological disorders (ataxia/vertigo), anemia, etc. Rashes and skins problems, and panic attacks, are not mentionned on these pages, but I've heard it in several testimonies and also in material from the Quebec Foundation for Celiac Disease, the FQMC (I'm Canadian and Quebecoise, that's why I mostly know Canadian resources). 

Many doctors - generalists, all specialists, neurologists - are not well trained and have very outdated information on celiac disease, and over the last decade there has been spetacular progress and discoveries on neurological disorders associated with celiac disease and non-celiac gluten sensitivity (NCGS). Try to have the blood screening tests done by your family doctor; if you don't have one, then by your neurologist, or any general practitioner, or a gastroenterologist. Whether the tests are positive are positive or negative, you shoud be referred to a gastroenterologist for an endoscopy and biopsy, to confirm the diagnosis. The most important/main blood screening tests are: IGA-human tissue transglutaminase (TTG), serum IgA (if you have serum IGA deficiency as some celiacs do, the first test will be a false negative), and IgA-endomysial antibody (EMA). It is also preferable to include a few other antibodies on the list to make sure you don't get a false negative, and for the screening to be complete and accurate, but I don't remember the full list, the use of some of these by doctors is more recent I think. You can check the other posts for the complete list, I've seen it in some posts...

I hope all of this helps you, have courage and good luck! 

Evelyne

[Evelyne555]

P.S.: hairloss can happen in several autoimmune disorders including celiac disease, according to internists who have taken care of me, and several testimonies I've heard (internists in Quebec are "super specialists" knowledgeable in several fields, but the definition is a bit different in the US I think). Loss of dental enamel can be present in several diseases including celiac disease, according to material from the FQMC - and according to my sister's dentist: she also has celiac disease, along with schizophrenia and epilepsy (seisures), and she has lost all her dental enamel (and has had 9 cavities and fillings). As for anxiety, that has been well documented as well: deep anguish, anxiety, panic attacks, depression. I had enormous anxiety and anguish for 5 years myself, and the diagnosis and gluten-free diet have helped to reduce that. 

Evelyne

[Wheatwacked]

3 hours ago, Evelyne555 said:

I had enormous anxiety and anguish for 5 years myself, and the diagnosis and gluten-free diet have helped to reduce that. 

You might be deficient in vitamin D. After decades of depression I added 10K a day of vitamin D and within weeks I stopped needing my anti-anxiety med. While you are at it check your intake of all essential vitamins and supplement as needed. D, K1, and iodine are never checked and are often deficient and made an amazing improvement in my life.