This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is there a list of gluten foods to avoid?
Unsafe Gluten-Free Food List (Unsafe Ingredients)
Is there a list of gluten free foods?
Safe Gluten-Free Food List (Safe Ingredients)
Gluten-Free Alcoholic Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
1. Eating gluten for 90 days and getting a blood test done (although I have heard this is not the most accurate way to diagnos Celiacs and I dread the thought of eating gluten for 90 days)
Best practices based on current testing parameters etc. & also scope if you can. Depends on insurance sometimes only blood test initially covered etc. Ideally they want 90 days.
I have been there- I could not finish a 90 day challenge.
I did what we are not suppose to do-Rebellious I guess and likely desperate after decades of mis diagnosis. I went gluten-free and then after a horrible mistake or intentional malevolent screw up at a restaurant I got badly glutened after 3 1/2 years of gluten-free. I called ahead asked if they could accommodate me etc, did best to advocate for self, and failed -they fed me gluten. I became extremely ill, knew when I bit into the flour, stopped eating immediately, reacted worse then ever in the days following, I finally went for testing - I had a 1st cousin who was gold standard Celiac diagnosed. It however took her if I recall correctly 2 years and over a dozen Dr's. I had so many symptoms off the charts then ever I crawled to Dr's desperate to get some help for my symptoms. Unfortunately not much relief , but an allergist/immunologist finally got me to a Celiac team. I had to wait 2-3 months to get in.
2. Eating gluten for 2 weeks and getting an endoscopy - am I allowed to request this??
Yes- as cycling lady said insurance may not allow this/pay for it. My doctors took me this route. We verified before insurance would pay- we still had co pays and bills. I told them I knew I could not do a 12 week challenge and my husband agreed. I at first refused to do the 2 week challenge, but would do a scope. I eventually gave in and for my kids (and since I still had many horrible symptoms) I said ok I'll try to do scope me both ends. I was mis diagnosed as IBS for 20 plus years based on symptoms only. I failed I could not get past day 6. I stopped tried to do a seventh day but could not. I am not trying to discourage you from doing this- it was not for naught. I was trying to do the dual gluten/gluten-free household the ordeal taught me (and my husband stated) all gluten is being removed from this house. I needed this more than I ever new. We also learned my son had my issues, and that I had multiple additional food intolerances that had to be removed. I hated the experience, but on a good day I am grateful for the team who helped reveal this to me. I was so messed up for so long I could not see the forest through the trees. They took me off all processed foods even gluten-free and had me keep a stringent food diary. I also when damaged react poorly to toxins in and around the environment MCS that I suspected but the ordeal gave complete clarity too. Ideally I would complete the 2 weeks, but I could not to be blunt the toll including mental was so strong that I had to be sensible as my children needed a mother and I could not fight so hard for that gold standard diagnosis that it got so dark that I left my husband a widower and 2 kids motherless. We learned a lot. Gluten and my other issues were removed from the home, my son has this, and it was bigger than I thought, but got complete clarity and learned a very valuable lesson. This went undiagnosed longer than it should, Gluten and other foods had to be removed from my life, I had to stop work etc to focus on my health for this was undiagnosed/misdiagnosed too long.
3. Genetic testing - sort of what I am leaning towards right now because if I do have the genetic disposition I would just live the rest of my life like I have Celiacs. Is there any reason that I NEED the actual diagnosis?
I wasn't offered this. I assume my insurance would not do it or my team/Celiac clinic did not see this as a match for me.
If you were in my situation what would you recommend?
I have been there. I wish my situation after being happily gluten free had not happened, but it was beyond my control. It gave complete clarity to the depth of my situation, connected a ton of medical dots throughout my lifetime, I learned the depth and degree of it not just gluten , but other issues too, my experience has made things better for my dear son. I am still not healthy enough yet to fully embrace and say this was meant to be and I am grateful this occurred and it was meant to be-yet. It was though and when I heal better than I am now) I will accept that. I learned much and even though I was gluten-free for 3 1/2 years because I felt better I didn't self diagnose myself as Celiac and join this forum until I went to the Celiac Team for testing-this was essential. I know I am celiac from a lifetime of symptoms -I won't bore you with details there are many in my posts-DH diagnosed as PUPPP's etc . Deep down I likely was in denial despite being gluten-free on 1. because I was mis diagnosed and 2. there are a whole lot of emotions etc that go with a lifetime of not knowing that came out , but I suppose it was not my time.
Ideally if you can and insurance will pay it is worth doing-it is a path and journey in and of itself. Likely you already know the answer to-but for those diagnosed the resources etc and having that record and closure is helpful. Who knows who in the family or you come across in life you may help as well. Plus we are here for you.
Question & Concern #2: I was tested for hypothyrodisim because everyone in my maternal family has been diagnosed with that but they all were diagnosed later in life (early 40s, I believe my mother went through premature menopause becuase it was undiagnosed for so long). Nobody in my family has heard of Hashimotos but when talking with my friend who is a nurse who has Hashimotos she said that sometimes the TSH test that I was given won't pick up on that. My TSH result was a 2.6 which I believe is slightly higher than the ideal range although the normal range on that result was considered up to a 5. I am going to go in and request to make sure that I don't have hypothyroidism of any kind including Hashimotos. Does anybody have any relevant advice for what tests I should request? I have been googling it but I was wondering if anybody went through that and has personal experience for the tests.
I am glad cycling lady responded. I immediately thought of her. I know when I am on gluten my thyroid feel off. I have been checked 2-3 times in life and I test "normal" , but I feel it is faltering. My mom (a nurse) after all this stuff stated you might be subclinical, enough you feel it, but the test doesn't catch it. I take comfort in her wisdom.
Good luck on y our journey
Yes, even with a positive on the genetic test and feeling better on a gluten free diet, does not mean you have celiac disease. You could have a sensitivity (all the symptoms, but no intestinal damage) or you could have issues with FODMAP foods (wheat is one of them). The gold standard is still the intestinal biopsy. Again, if your antibodies were super high, then odds are you would have celiac disease. Really nothing elevates celiac disease antibodies super high other than celiac disease. They might be slightly elevated for other autoimmune disorders.
I will share my story. My hubby went Gluten Free 16 years ago per the POOR advice from our GP and my allergist. Oh, the diet worked after a year of adjusting and making mistakes. But does he really have celiac disease? We do not know and he refuses to do a challenge. Feeling good trumps feeling sick. Me? I went in for a routine colonoscopy (yep, I am over 50) 12 years after my hubby went Gluten free. My GI looked at my chart and noted my life-long issues with amenia. I have two kinds of anemia (one is genetic). The iron-deficiency anemia is what my GI noted. Despite repeated supplementation, I still had it even after going through menopause. He ordered a full celiac antibodies panel. He scoped me from both ends and found intestinal villi damage. No disputes. FOR SURE. And I needed that diagnosis because I did not have GI issues at the time and worse yet, I knew exactly how a gluten free diet was going to impact my lifestyle. You bet I was in denial, but the lab results do not lie.
My hubby would be the first to tell you that I get more support from family, friends and medical staff. They believe me. Him? Some doubt (but we know better). With my diagnosis, I was able to get the full celiac panel for my daughter and have her thyroid monitored). No fighting with her doctor or insurance because celiac disease is definitely genetic. Two months into my diagnosis, I fractured my back doing NOTHING. Yep, I had osteoporosis thanks to celiac disease. It has been easy to get vitamin deficiency tests, bone scans, etc. because I have a diagnosis. Even my new GI has been supportive especially since I gave him hard copies of everything for the past 20 years with a summary cover sheet.
The cold? My SIL was always cold. Her thyroid was and is fine. Now she went through menopause. She is always hot now. Having flashes, wearing light layers and even wearing her hair up. So, you might have to wait a few decades. 😆 to get relief.
The problem with autoimmune issues is that symptoms often overlap. My doctor and I suspect another AI issue, but what am I going to do? Take drugs? No. So I just keep moving forward. That is something else to consider. Just keep in mind your family history and get tested if needed.
You know your particular set of health circumstances. Only you and your doctors can make the best course of treatment for YOU.
If the company says it's gluten-free on it's website, what do you think they will say that is different if you call? The gluten-free drug list is just a partial list of gluten-free drugs. There is no way he can check on every prescription and OTC medicine. The fact that the manufacturer knows enough to put it on the website is great!
Can anyone tell me if Finasteride is gluten free? It is not on the Gluten Free Drug list but the website states that it is gluten free. I will call the manufacturer on Monday but for the time being does anyone know or take Finasteride? Thank you for your assistance.