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
From my understanding, it is the ends of the villi that produce the lactase that helps digest the lactose in milk. When the villi are damaged and inflamed, they don't produce the lactase which leads to lactose intolerance. Some individuals however may have a preexisting intolerance unrelated to the small intestinal damage. NCGI does not damage the small intestine.
My blood tests were negative. I had the biopsy and I have stage 1 lesions which would explain why the blood tests were negative. (It wasn't the full panel though). I have had a lot of symptoms though and since the biopsy have been diagnosed with iron deficiency anemia.
I will be getting the results next friday when we go for the follow up appt. I thought it would be a good idea to be prepared first.
Thanks for the suggestion about contacting the celiac support group for a good GI.
We definitely won't be going to the GI I saw. He had a locum at my initial appt who said "I probably had IBS" then said to just have 2 slices of bread for 2 weeks prior to the endo. Then at the endo he had 2 students perform the endo. They only took 3 biopsies and I am not sure if they laid them on the slide correctly.
I definitely want my son to get an endoscopy. I think it will help him to stick with his diet if he has a definitive diagnosis. I am hoping my partner agrees to then make this a gluten-free household. FX we don't have to wait too long for an appt.
After recently being diagnosed with gluten intolerance (marsh 1 lesions), I got my 4 yr old son blood-tested. I am not sure which tests they did (they didn't do the full panel with me) but the nurse told me over the phone his gliadin is elevated and his iron levels are low. I have to wait a week until my appointment, but I thought I would post to see what people's thoughts are.
Have you had your iron levels checked? Shortness of breath and wounds that take a while to heal are signs of iron deficiency. Also, have a look into FODMAPS diet. Cutting out certain foods may help with your GI isues.
Thanks for your post Peter. I suspect this is celiac disease too. A friend was diagnosed in her 50s and her villi will never fully recover. I don't want that to happen to me and am taking this very seriously. I also suspect my dad and my son have it too. My dad is now in a nursing home with dementia and we are awaiting the blood results for my 4 yr old son (whose eczema is starting to look like dermatitis herpetiformis.)
Yes I am planning on remaining strictly gluten free. I am now so sensitive to gluten and have had my share of horrible symptoms: abdominal pain, breast and back pain, hair loss, tingling in the hands and feet, the list goes on...
I got my results from my endoscopy a month ago now and I am still trying to work things out. I have duodenitis (inflamed duodenum) with increased intraepithelial lymphocytes. My villous crypt ratio is 2:1. (I have read the normal ratio is 4-5:1).
From my research this is called mild enteropathy celiac disease (one article even calls it a wolf in sheep's clothing). They also call it potential celiac disase or someone likely to develop it down the track. I have been virtually gluten free for about 5 years prior to the gluten challenge just having the odd thing occasionally. I struggled with the gluten challenge as my body has become so sensitive to gluten now. I am not sure if I didn't consume enough for the challenge or the disease is yet to develop.
Since the endoscopy and going gluten free, I have been diagnosed with iron deficiency anaemia. I accidentally had some gluten 3 weeks ago and since then I have had rhinitis (my nose is permanently blocked with green snot!). This was a symptom that I had during my gluten challenge. I have also started to develop an itchy rash on my knee.
We have a similar result from the biopsies. I recently had an endoscopy and the results were that I had increased intraepithelial lymphocytes. This is a biomarker for celiac disease but you also have to have the villous atrophy. I was diagnosed with mild duodenitis (inflammation of the small intestine consistent with gluten sensitivity). My villous/crypt ratio is 2:1 whereas the normal range is between 3:1 and 5:1. The doctor said this is not celiac. According to the marsh scale this is between stage 1 and stage 2. They only call it celiac when it is stage 3.
I haven't had the gene test. I believe this is one of 2 things (for me): either I didn't have enough gluten in my challenge or it is non-celiac gluten sensitivity.
Either way I am staying well away from gluten. My symptoms were horrible. I now have iron deficient anaemia from malabsorption issues.
I am going to book my son in to see the doctor. I will also check out the newbie thread. I see my doctor tomorrow about my iron levels. I will ask her for a copy of the celiac blood tests (I had it done on 2 occasions).
thanks for your post. I suspected I had a wheat allergy as a 14 year old and tried my best to limit my consumption. I never even thought to get tested back then. In my 20s I got blood results back as borderline anaemic. The doctor didn't do any other tests putting it down to me being a vegetarian at the time. When I was about 25 I would get liver pains whenever I would eat certain foods. I always thought my bood couldn't handle fats or sugars. When I was 36 I went to a nutritional doctor because I just wasn't feeling very good and I wanted to prepare my body to get pregnant. I was really surprised despite my well balanced diet with lots of fruit, vegetables and eating meat again I had a lot of deficiencies. Here is the list:
• low vit B12
• low white cells
• low platelets (essential fatty acids)
• iron deficiency
• iodine deficiency
• calcium deficiency
• vit C deficiency
• zinc deficiency
I also had an impaired liver detox function. She got me to do an allergy test and it said that I was not allergic to wheat. I did not realise at the time that wheat allergy and gluten intolerance were 2 completely separate health issues. I think she did a celiac test too but I wasn't consuming a lot of wheat (and other gluten) then probably for it to pick up on the tests. In the back of my mind I thought I don't have issues with gluten because my wheat allergy test was negative.
After a couple of chemical pregnancies and a blighted ovum I decided to cut out gluten in 2008 to try and get pregnant. I didn't realise at the time to avoid spelt and oats, etc. so I had a very low intake until after my son was born. I was so hungry when I was breastfeeding it was easy to indulge in the odd pastry or scone. I complained to my doctor about back pain which prevented me from going back to work. I changed doctors and complained to the next doctor about feeling so fatigued. He just put it down to the fact we had a young baby.
The gluten intake over the next few years was sporadic. Looking back, when I did indulge more is when I had health complications: 2 cases of pneumonia in 2011and the tummy troubles which sent me up to the hospital casualty in 2012 and returned again this year. On easter saturday we went to friends for morning tea. I ate a piece of banana bread, a hot cross bun and then they invited us to stay for lunch and cooked pasta. That sent me over the edge and I was in pain for the next 48 hours and the tummy issues returned. I finally connected the dots and stopped consuming gluten. I saw my (a new one) doctor the following saturday and she suggested I check for celiac. The results came back negative. She didn't do the full celiac serum test and I also hadn't been consuming enough gluten prior to the test for the results to be accurate. With the symptoms I had, luckily she thought it was important to refer me to a gastro.
I am not sure if I consumed enough gluten prior to my endo. The gastro. was away and had a locum doctor at my initial appt. He said to just consume 2 slices of bread for 2 weeks prior to the endo. A friend who is celiac and was diagnosed after her 2nd endo. suggested 6 weeks of gluten. After reading the uni of chicago celiac centre suggest 6-8 weeks (the australian celiac society recommends 12 weeks) I started consuming 7 weeks prior. One week in though I had to stop for 2 weeks as we had planned an overseas trip and I was sick and didn't want to ruin the holiday so I put the challenge on hold. It didn't stop me feeling sick though and I had to go to the doctors there for an ear and lung infection.
Just went on a tangent!
Anyway, I am still suspecting celiac mainly from my history with the impaired liver function and nutritional deficiencies. I have just been checked for iron and B12 deficiencies because I am so wiped out at the moment. I also got a skin rash on my knee during the gluten challenge that was really itchy. I don't know if this was the beginning of DH or not.
Thanks for reading my story
Thanks for your reply Cycling Lady
I was very sick for the whole 7 weeks of the gluten challenge. I was so sensitive that I am not sure if I had enough gluten for the challenge. The gastro. seemed to think if I had celiac I would have to avoid soy sauce but with gluten intolerance I don't have to be so vigilant. I tested his theory yesterday. I was at a kid's party and there was nothing for me to eat. My blood sugar levels had really dropped and I wasn't prepared with snacks and caved in and ate chicken wings marinated with soy sauce (and who knows what). Well I am definitely feeling the effects so I will be more vigilant in future and better prepared with my own snacks.
I know gluten is the issue but I am still not sure whether they failed to diagnose celiac, whether it hasn't fully developed yet or whether I am gluten intolerant.