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. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Thanks, everyone! OK, you convinced me. I admit that I have felt that NCGI was not all that big a deal. But, you are right, and I know better. It is most likely the cause of many if not most of my medical woes. I just need to move past my denial and start taking care of myself by doing what is called for. Follow the Gluten Free Diet.
Thank you for your words of encouragement.
By the way, the Cheez It's, totally not worth it! I'm still uncomfortable!
Thanks for your reply. Yes, I am going gluten free. Today was day one. Everything was fine and I was feeling good until my eldest walked into the family room with a beautiful, new box of Cheez Its. It was so shiny and pretty. How could I resist? That was just cruel beyond cruel of her! What was she thinking? OK so, I caved, but I only had one handful. I'm detoxing I guess. I think it will be a slow, painful process for me.
You suggested having my bile ducts checked. What should the be checked fo?
It is great to hear that so many of our health problems resolved once you stopped eating gluten. My GI suggested that that might happen for me as well. We will see, I guess.
So, I received my diagnosis, yesterday. My endoscopy was clean both visually and from the pathology report. The only thing that was identified as being somewhat out of the ordinary is that my duodenum is inflamed. The inflammation is classified as mild to moderate.
My GI diagnosed me as Non-Celiac Gluten Intolerant, possible IBS. He wants me to go see the surgeon who removed my gallbladder, in November 2011, to discuss the possibility that there might be scar tissue or adhesions in my abdomen causing my abdominal distress. This seems unlikely to me, but I will go.
So, I'm not sure where I belong now or what I should be doing. I know it's time to go gluten free. Should I be doing that here? Should I be looking for a supportive IBS community? Maybe a Multiple Chemical Sensitivities community is more appropriate. Once again, I feel like a step-child. I feel a little lost and a lot overwhelmed.
Thank you for your advice. I did have a Celiac panel run, but the lab results seem only to have two of the four results the doctor requested reported. I called my PCP to get another copy of the results but have not heard back yet.
My TTG is 3. The Reference range states that 19 or less is negative so that looks quite negative to my eye.
It states that the Reticulin AB, screen, was negative so the Reticulin Ab, IgA titer was not performed.
The only reference I can find to Endomysial AB, IgA looks more like a reference range than my numbers because it is recorded as <1:10. I'm not sure if I actually received a value for this or not.
Very strange report.
I'll try to get a better report and also my endoscopy results and see what you guys think. I cannot tell you how much I appreciate everyone who takes the time to give me support whenever I have a question. Thank you all! I'm learning so much from your generosity!
Hi, like you I am still in the pre-diagnosis phase so please take my comments with a grain of salt. However, I also had a negative blood panel, which from all, that I have read is very common. When my PCP finally sent me to a GI, I did not ask for celiac testing but mentioned my GI symptoms and negative panel, he immediately scheduled an upper-endoscopy to check for Celiac as well as a couple of other exams. He said, "I don't want you to go another 5-6 years without a proper diagnosis.". My understanding is that a large number of people diagnosed with IBS are actually misdiagnosed Celiacs or non-Celiac gluten sensitive.
Yes, gp get tested. Please get an upper-endoscopy, or maybe other here are recommending the stool, or saliva testing. I do not know. But, undiagnosed Celiac is a problem and it looks like you are a candidate.
Well, Tuesday is the big day! After my request for a celiac panel turned up unremarkable, like the rest of my Fibromyalgia-life, my PCP finally got tired of listening to my post-gallbladder removal complaints and sent me to a GI.
My new GI took one look at me at decided to do three things: an ultrasound in case I have a small gallstone hanging out in a bile duct somewhere and wreaking havoc, and a dual-purposed endoscopy. First, he is going to do a visual exam for a small ulcer which would not have been picked up by my recent barium contrast MRI. (I guess those only catch 30% of ulcers!). Second, he is going to do the biopsies required for in his words the "good-standard" test for Celiac.
Here is my question, my gallbladder just came out 2 years ago. I have had non-digestive Celiac related symptoms my entire life and especially for the last 25 years. However, my Tummy Troubles really began when I lost my gallbladder. Which leaves me to think that while Celiac was damaging my gallbladder, my gallbladder may have been doing its level best to help keep my gut in check. So, my question then is, if that is true, and if I am Celiac, will two years without my gallbladder have allowed for enough physical evidence to be present when my doctor does the biopsy? I can't stand the thought of another "everything is fine" result if it truly isn't.
Let me begin by telling you how sorry I am that your daughter is struggling with these mystery ailments. As someone who has a "rule out" disorder herself for the past 25 years, Fibromyalgia, I know how frustrating some of these situations can be.
You mentioned that your daughter recently had "mono". I wonder if she actually had Mononucleosis or if she might have had the Epstien-Barr virus. I am not a doctor, but it is my understanding as a patient that if she had Epstien-Barr you would be able to see a titter of the virus left behind in her CBC, if you add an Epstein-Barr titter request to your lab draw. Just ask her doctor. The higher the number, of course, the more active the virus still is. Again, as I understand it, the aftermath of Epstein-Barr can be either Fibromyalgia: diffuse body aches with hallmark trigger points and fatigue, or Chronic Fatigue Syndrome: overwhelming fatigue with diffuse body aches. Yes, they do overlap and there are other symptoms.
Also, one of the other responders posted about Benign Hypermobility Syndrome. I would like to tell you that I am a former dancer. I studied ballet as a child for 10 years. My rheumatologist told me that dancers and gymnasts quite commonly have BHMD, basically it just means they can overstretch some or all of their joints. This may be great for flexibility and graceful movement, but it wears then supportive structures out sooner than they were intended to be used. Think of pulling a rubber band as tight as you possibly can. Now, do it again. And again. How many times can you stretch one rubber band as tight as you possibly can before it has been over-stretched?
TMJ and migraine headaches are also considered comorbid conditions.
So. In conclusion, I am so sorry that your daughter is going through all of right now. But, I'm so proud of you for trying to get her a correct diagnosis for her at the age of 12 so she hopefully won't end up like me, 49 and still trying to get a correct diagnosis.
Yes, I am staying on gluten until after my doctor reviews my labs and decides whether or not to request an endoscopy. He did say that he felt the lab work was not super reliable, so maybe he will feel like following up with additional studies it they are close enough to being weak positive.
I was remembering, that my daughter, was having daily stomach aches at the age of 8. Her doctors were never able to find a cause but casually mentioned once, "Oh, by the way, we tested you for food allergies. You are allergic to peanuts, egg whites, and wheat."
Ok, so, I have an advance copy of my blood work from last weeks celiac panel but do not have an appointment to go back to have a consultation until December 2. I'm hoping some of you will be able to help me interpret these numbers.
In addition to gas, bloating, and cramps, I am also currently suffering with the following:
Fibromyalgia, CFS, migraines, myofacial pain syndrome, degenerative disc disease, patellofemoral syndrome, benign hyper-mobility, insomnia, anxiety and depression secondary to living with chronic pain for 25 years, kidneystones, and a recent gallbladder removal secondary to pancreatitis.
It appears to me, however, that Celiac might not be the cause of all that ails me?
tTG. 19. 19 or less = normal
Reticulin Antibody negative
A few non-celiac but interesting numbers:
ESR Sed rate 8
Basophil% Reference range 0.0-5.0%. Mine is 0.6. They've never checked this before for me. Hm, that's of some interest...
Does anybody have any thoughts?
thank you in advance, your input to my previous post was so amazing. I am so grateful for everyone's insight!
Thank you for your reply and for sharing about your family. I am sorry about the challenges that your children have had to face. Your post made me think about the genetic connection between celiacs and their families.
My own daughter, at 8, started complaining of daily stomach aches. Unable to determine what was wrong, they sent her to the hospital where they tested her for everything. They never found any cause for her pain. They did however say this, "By the way, we ran an food allergy panel on you. You came up positive for peanuts, egg whites, and wheat." They didn't give us any advice, or education, or follow-up with her,
I remember that after a while she slowly started eating some of those foods again and it didn't seem to bother her anymore. Being so poorly educated on the subject, at the time, I thought she had "outgrown it".
Now, I suspect that it is more likely she is also celiac as she suffers from migraines, severe pms, and had an irritable uterus during pregnancy which ended in an emergency c-section.
Thank you for your thorough and thoughtful reply. You have given me much to consider. While I would prefer to avoid an endoscopy if possible, because I blame my seven exposures to general anesthesia within eleven months in 2011 for the fibro flare that I have yet to shake off, I do see the wisdom of having a definitive diagnosis as you have pointed it out. Thank you.
Thank you also for commenting, as others have, on my nutrient levels. After I get these results back, I will be certain to request that anything that hasn't been checked is.
Well, I completed my upper gi with baium today. Vthe doctor's first impression was that I do not appear to have an ulcer. Yea! We can check that box on the list of things to rule-out.
They also drew several viles of blood to check for celiac and rheumatoid factor. GFinDC suggested thatbI request a vitamin and mineral level, if that isn't being done now, I will be sure to ask for it. Thank you.
Does anybody have an opinion on whether now is an appropriate time for me to try a gluten-free diet? Do I need to wait in case doctor wants to do an endoscopy? Are endoscopy's essential to a proper diagnosis?
So, I'm new to this forum but let me add a piece here.
If you suffer from migraines in addition to celiac: Cooking ahead is great; but be certain to freeze the food you prepare. It is important for migraine sufferers to avoid excess consumption of tyramine. Tyramine is an amino acid known to cause headaches and increase the occurrence of migraines. It Is known to be naturally contained certain foods like aged cheese, red wine, and soy sauce, but it it also builds up in leftovers stored in the refrigerator.
This makes your once yummy, safe gluten free meals a potential migraine trigger food for us sufferers.
Hope this helps someone.