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Possible Celiacs - How To Go About Getting Diagnosed?

smpalesh

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smpalesh Explorer
smpalesh
Posted

I have had health problems for years and have ended up diagnosed and treated for GERD, IBS, and a variety of other health issues. I have been diagnosed with fibromyalgia and chronic fatigue syndrome. I had my gall-bladder removed in 2004 at the age of 25. I have almost all of the symptoms of celiac disease and I have been getting sicker over the last few months to the point that I can barely function. Here is my list of symptoms:

abdominal bloating and pain

chronic diarrhea

constipation

floating stool

severe fatigue

bone/joint pain

tingling numbness in hands and feet

itchy skin rash (I think it is likely DH) that occurs on my knees and backs of my elbows. Here is a picture of the rash on my knees (this was a month ago, it is currently not active but it comes and goes and lasts for months and is insanely itchy!). It also gets much worse look than that as well. 540486_10150823816231314_514286816_n.webp

I'm sure there are other symptoms but I can't think right now

Blood tests that have been done over the last few years have shown chronic vitamin D, vitamin B, and vitamin K deficiency. I have low iron and also abnormal liver enzyme results (but no one has ever looked into the liver results). Despite taking a ton of multivitamins and iron supplements the numbers do not improve.

Basically I feel horrible all the time. I am barely able to function and my poor kids aren't seeing much of their mom because I am in bad almost the whole day (thank goodness I have a supportive husband). So can I just walk in to the family doctor's office (I am in Ontario, Canada) and ask to be tested for celiac? It seems that everyone on here has had a horrible time getting doctors to test for celiac and I don't understand why. If a person has all the symptoms why wouldn't a doctor just want to order a simple blood test?

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guest134 Apprentice
guest134
Posted

The celiac blood panel is 125 dollars and is not covered by OHIP. Go in and get it, you get the Tgg IgA, total IgA and both deamidated peptides, I did despite my doctors constantly saying it was a waste of time and money, I had odd results that are indicative that something is going on and now they are finally giving me the proper tests to find out. One tip I will give living in Ontario or Canada in general is be aggressive and vigilant, who cares if the doctors roll their eyes at you and what not, because you are not paying directly they will avoid at all costs giving you proper tests or referring you to a GI. They first told me my sickness back in June would go away only to find out I had Salmonella Typhoid which caused colitis and has caused other complications do to their neglect (might have celiac now). If I would have listened to them I probably would have died or been very sick right now so do not let them brush you off like nothing if you feel like it isn't.

smpalesh Explorer
smpalesh
Posted
  • Author

How did you get them to order the test? Did you just ask them?

The celiac blood panel is 125 dollars and is not covered by OHIP. Go in and get it, you get the Tgg IgA, total IgA and both deamidated peptides, I did despite my doctors constantly saying it was a waste of time and money, I had odd results that are indicative that something is going on and now they are finally giving me the proper tests to find out. One tip I will give living in Ontario or Canada in general is be aggressive and vigilant, who cares if the doctors roll their eyes at you and what not, because you are not paying directly they will avoid at all costs giving you proper tests or referring you to a GI. They first told me my sickness back in June would go away only to find out I had Salmonella Typhoid which caused colitis and has caused other complications do to their neglect (might have celiac now). If I would have listened to them I probably would have died or been very sick right now so do not let them brush you off like nothing if you feel like it isn't.

guest134 Apprentice
guest134
Posted

How did you get them to order the test? Did you just ask them?

I went into a clinic until I found a doctor who would give me it. They are pretty reluctant to give the tests as many in this province regard them as useless. Just go in and say you are willing to pay for it and want to get the celiac panel done.

nvsmom Community Regular
nvsmom
Posted

There is always the biocard home test that you could order. It is a ttg Iga test. When I saw my doctor about celiac, I came in carrying my positive biocard test and it was no problem (I am in Alberta).

captharv Newbie
captharv
Posted

I have had the most itchy rash on forearms, wrists, elbows on and off for 3 years. I also have severe osteoporosis of the spine and was put on Oxycontin for pain about the same time rash started. After being on 4 different pain meds without any results, trips to ER, no relief. Three months ago the rash started from my knees down than to the outside of my thighs and back. Last ER visit my wife insisted on a blood screening. Lab results were back within an hour.........ER doctor states all looks normal. After giving me yet another Prednesone shot, some cream and Prednesone RX my wife asked for a copy of the lab report. Next day my son looks it over.......four of the numbers were at the highest and lowest of the normal range. Armed with this info and photos of my rash my son stumbles on 'The Gluten Rash' Dermatitis Herpetiformis - Skin Rash From Gluten!!!! I stopped Gluten intake a week ago and it is amazing how quickly the rash has cleared and how better I feel. My son is not in the medical field but armed with blood test results, pictures and Thinking Outside the Box be found my problem!!! I hope my story helps at least one other person.....we have to be our own doctor sometimes.

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