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tylerevelyn

I Need Advice On How To Get An Accurate Diagnosis

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About two months ago, I started getting infections like crazy. Kidney infections, mastitis, BV, and an array of other random pains in my body. I felt like I was falling apart. During the midst of getting all of these things treated, a CT scan revealed that the kidney that had been infected was very underdeveloped. This urged me to figure out what was causing the infections so I could prevent any further damage to my kidney. Somehow, one of my friends recommended that I read about gluten sensitivity (or celiac). Everything started to make sense. I could look back on the past year+ of my life and all of the bizarre symptoms I had fell into place. Some symptoms I had were very loose stools, stomach cramps, bloating, gas, vomiting, diarrhea, headaches, brain fog, pelvic inflammation (pain) and obviously, a weak immune system. Despite the fact that I take very good care of my health, and eat a well balanced diet. So, I went gluten free; Today marks about 1.3 months of being gluten free. About 2 weeks after taking gluten out of my diet, I went out to eat at a mexican restaurant with my husband (which, we very rarely ever do), and ate some corn chips. Well, I hadn't thought of the fact that they'd been fried in the same oil as flour tortillas and there's no telling what else. Also, that restaurant corn chips are probably not JUST corn. About 4 hours late, I was in the worst pain of my life. The bloating in my stomach was unbearable. It was worse than labor pains. I felt dizzy, confused, and in so, so much pain. If I hadn't thought that it was caused by the gluten, I would have definitely went to the emergency room. So, a few days ago I visited with a naturapthic doctor; she feels that I do have a sensitivity to gluten. And said there are a few ways to find out 1.eat some gluten, see what happens 2. a biopsy 3. blood test. So, I've decided that I should get a blood test. However, browsing around the internet, reading about other's experiences had been discouraging. False readings seem to be so common. Right now, financially, I'd like to take whatever tests are necessary and figure it out ASAP. What test have the best, most accurate results? For celiac, and non-celiac gluten sensitivity? Which should I request? Have any of you taken the stool test? Do I need to start eating gluten again before the test can come back with an accurate reading? For how long, and how much? Please share your experiences, what worked for you, and any advice you may have. Thank you. Have a blessed day.

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Welcome, evelyn. You are about to embark on what may be one of the most frustrating experiences life has to offer us -- trying to get an accurate celiac diagnosis :P This is compounded by the fact that you have been gluten free for over a month.

The normal procedure is to ask your doctor for a full celiac panel consisting of the following tests:

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide) - IgA and IgG
  • Total serum IgA

However, since you have been gluten free, yes you will have to go back to eating gluten and there has been much dispute on this board recently about the current recommendations for gluten eating prior to testing. Many doctors believe you only need two weeks, and there is someone on the board who was diagnosed positive after only two weeks. Most posters on the board believe that a longer period is required and from what I have gleaned, the consensus seems to be 6-8 weeks, with at least a slice of bread per day, to ensure that you do not get a false negative. We are talking about how long it takes to cause a sufficient antibody reaction to gluten that can be measured in your bloodstream..

And yes, even if you ate gluten for a year it would still be possible to test negative on the blood test if you happen to have non-celiac gluten intolerance and also have a negative biopsy. Celiac disease is defined as damage to the small intestine caused by gluten with specific findings on biopsy. Some people have less gut damage and more neurological damage, or skin damage as in dermatitis herpetiformis and tend to frequently test negative on blood and biopsy..

If your blood tests positive most doctors refer you to a gastroenterologist to have an endoscopy of the small intestine with biopsies to confirm the diagnosis. Some doctors will diagnose on positive blood work alone with a positive response to the diet.

There is at the moment no test for non-celiac gluten sensitivity except positive response to the diet. :)

I will look up the link to the thread and post it later.

Best wishes for a successful diagnosis.

ETA:

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Welcome!

Removing gluten for well over a month will definitely cause all blood and biopsy results to be less accurate and likely negative which will leave you with many unanswered questions.

Blood tests - All tests in the Celiac blood panel measure antibodies that are created in response to gluten ingestion. No gluten - no antibodies to be measured.

Endoscopic Biopsy - Analyzes tissue from the small intestine to determine cell changes and degree of damage to the villi. Once gluten is removed healing begins - it is possible that damage will be discovered for some time after gluten removal, but the test will be far from an accurate assessment.

Dietary Response - this is the simplest test. Should you decide to not re-introduce gluten into your diet at this time, make sure you remove ALL sources of gluten for at least three months (six is better) to monitor symptom improvement. This is the only test for Non-Celiac Gluten Intolerance.

Your description of symptoms and current reaction to gluten do indicate NCGI and possible Celiac Disease. It really is up to you if you'd like to reintroduce gluten in order to pursue all available testing.

Good Luck :)

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So, yesterday after being gluten free for almost 1.5 months (aside from 1 accident), I decided to eat some gluten and see what happens- To see if I got really sick like before, so that I could be certain. I called my doctor and asked if he'd write me an order for the necessary blood test. He says, "well, if you feel better off of gluten, just don't eat the stuff!", "why would you want to pay to get tested if you know your sensitive to it?" I suppose this is true to a certain degree, and I really can't afford the tests right now. But, I need to know, just in the case that there's another problem going on. Anywho, to break the gluten fast I ate a bowl of gluten containing cereal, and a piece of sourdough. Within 20 minutes, I was in the worst mood of my life. I just felt angry, anxious, and very irritable. I felt in a fog. I did feel bloated, and I had diarrhea today, but no serious, unbearable bloating like before when I accidentally consumed gluten. Is this normal? What should I do about getting tested? Another symptom I didn't mention is colon pain. I had an ultrasound done to make sure it wasn't my ovary, so the only other thing it could be is my colon. It feels especially painful today. For the past month it has just felt inflamed, and sometimes the pain even goes down my leg. Do you think a colonoscopy would reveal any damage? My naturopathic doctor said it could take 6 months for any inflammation to go away.

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Also, are there any links between kidney dysfunction and celiac? Even though my urine looks good, I'm still having pain there. It's very frustrating.

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