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
Okay.....this may be out of line since I'm not a doctor, but is anyone else totally frustrated that the only tests run are the tTg's?!?! My understanding is that, these days, celiac is just as likely (or maybe more so) to show up with the DGP tests and that running only the tTg's (IgA and IgG) is for screening purposes and for rechecks after diagnosis, not for all out initial testing. My son was diagnosed at 16 (five years ago) with only the tTg which lead to the endoscopy for confirmation, and I consider ourselves very fortunate! Our doc at the time knew almost nothing about celiac but had just gone to a presentation at our local hospital two weeks prior to hear Dr. Fasano speak. He requested the IgA serum and both tTg's out of simple curiosity. And my son's only symptoms were short stature and delayed puberty! We have since moved to a different state, and if our daughter's GI had only run the "screen", we would still be in the dark about her. Her DGP IgG was 160 with <20 being negative, and all the others were within normal ranges. I've been through this testing thing with all three of my brothers, an uncle (my dad had celiac disease), and 3 friends....all who asked for a celiac panel and all who got only the tTg tests! Uuggghhhhhh!!!
All I ask is that you know what tests are included in a true celiac panel and ask the doctor to see what he/she is ordering, and/or give them the list. Every time it has to be redone because it wasn't all inclusive in the first place is more money out of your pocket.
blackbetty and Shelbz, don't be fooled by your current symptoms, or lack of. Remember, we now know that most gluten symptoms are NOT digestive in nature. The classic celiac symptoms are diarrhea and/or constipation, bloating, cramping/pain, etc -- but the list of over 300 celiac symptoms suggests that the classic symptoms are no longer the major indicators of this disease or intolerance. Personally, at the first and second levels of my family, there are 6 of us with diagnosed celiac disease, 2 who are sure but have been gluten free too long to test positive, 2 who are gluten sensitive, and several in denial/not interested. Only my diagnosed niece reacts to gluten with stomach pain, while one of my "uninterested" nephews has had stomach issues all his life. For the rest of us, the symptoms range from anemia, extreme fatigue, DH, hypothyroid, to severe brain fog, depression, acne, short stature (now remedied), delayed puberty, and others. I went gluten-free when we found out about our son and decided to do a gluten challenge last year. Prior to being gluten free, I had dealt with mild depression and severe fatigue + brain fog most of my adult life, and was surprised that those symptoms were milder than I expected when I reintroduced gluten. However, the lack of energy and brain fog were so frustrating that I could only tolerate 6 weeks of the challenge. My blood tests were within normal ranges at that point, but with both genetic markers along with a slew of symptoms and a huge family history, I have no doubt that I have celiac disease and choose to stay gluten free. I WISH I had stuck with the challenge!
The two of you look really young, so my personal opinion is that it's very important to get a diagnosis. Potential issues that could arise as you get older or with any future children could point back to your diagnosis and give docs a better foothold on your situation. On average, it takes 11 years for someone with celiac disease to be properly diagnosed, so please don't mess an opportunity! Hang in there and don't be thrown off by your mild reactions so far. Like cyclinglady indicated, you never know what's lurking under the surface....even when you don't feel sick.
Bane, I am an infrequent poster, but I have followed this forum almost weekly (sometimes daily) for 5 years since finding out that our oldest son (now 21) has celiac. His was found with a high tTg that lead to a positive endoscopy. That single discovery began the celiac avalanche for my family. Because of the reading I did here, I knew that everyone in our family needed to get tested, and I became insistent, unwavering, almost nagging in my certainty. Here's what we have uncovered to this point:
My father: diagnosed at age 72, 1 1/2 years after my son. No blood testing, but positive endoscopy with severe intestinal scalloping and no villi. Now deceased from pancreatic cancer.
My mother: self-diagnosed in the 80's with a "wheat allergy." Has been gluten free so long that testing would be pointless. We thought she was crazy.
Sister: diagnosed with DH 3 years ago, which is a positive diagnosis for celiac.
Brother: diagnosed last summer with ALL blood tests on celiac panel being strongly positive. Endoscopy showed blunted villi.
Brother's daughter: blood work positive, though I don't know what tests were run. No endoscopy.
Another brother: Doc only ran Iga serum and tTg tests with normal results last fall. He is hypothyroid with a strong family history. Really?? No full panel?
Me: strictly gluten free for 4 years. Positive for DQ2 and DQ8 gene markers. Tried gluten challenge last year but could only endure 6 weeks. Complete panel showed normal levels. Still gluten free.
Daughter: Complete panel with only DGP IgG showing strong positive, all others normal, endoscopy was negative, positive for DQ2 gene. As a teenager, she refuses to accept that we caught it early with the DGP. Still lovin' her pizza...until I have her tested again. ;-)
2nd son: all bloods normal when tested 4 years ago, positive for DQ2 gene. Will retest if symptoms occur.
As you can see, my family alone has the full range of tests, or lack thereof, as well as results. Every test is important! It seems that some doctors don't know the difference between a full panel for TESTING and a couple of tests for SCREENING. I remember someone here posting about that, though I don't recall who it was. Also, from all my research, the tTg Iga is very accurate (as long as you are not Iga deficient) in detecting advanced damage to the intestines. The DGP can be an early detector before too much damage is done. There's a reason for each test, so get them all if you can!
I have spent a lot of time reading and researching over the last 5 years, and personally, I would not question what the moderators of this forum recommend. They have seen it, experienced it, heard it all. None claim to be doctors, but as far as educating newbies on celiac, they are tops!
Sorry this reply is a little late, but you don't really need a referral from your PCP. He/she can order a complete celiac panel to be run...it doesn't have to come from a specialist. Be sure to write down or have on your phone the list of tests that cyclinglady posted above and MAKE SURE the doc shows you that those tests are requested. If it lists "Celiac Panel", ask what tests are included. I have said the same to everyone in my family and a few friends who have gone for celiac testing, and so many of them have showed me their result reports which list only the total serum IGA and the tTg. They asked for a full celiac panel to be run, but never did enough research to really know what the panel consists of and didn't insist that the docs tell them what they were ordering. Unfortunately, they are not getting the complete picture and stay frustrated that they can't figure out what's wrong. GO ARMED...please!!
I've read on this forum and through other research that villous atrophy can be caused by other culprits, but with the symptoms you experience I would want to totally rule out the most obvious thing (gluten) first before moving on. I share your pain in getting a definitive diagnosis. You are young and having that knowledge could be very important for any potential future ailments, and certainly if you have or decide to have children. Be your own advocate, read all that you can, and insist on getting answers.....even if that means doing a gluten challenge . From what I understand, you are working with a very knowledgeable organization. Maybe it's not out of the question that your doc would give you that diagnosis if you asked specifically? I have been under the impression that villous atrophy means celiac, especially since blood testing can be so touchy. I know there are others here who have much more experience and can address this better. Hang in there kiddo!
KayJ, so sorry this response is late. My hope is that you revisit your posts to check on new replies.
Our oldest son was 16 when we got his diagnosis. As a child, he always measured in the 75-90% range for height and about the same for weight. As he got older, he began to measure out in the 50-75% range for height and 85-100% for weight. We didn't think much of it because our boys were always "husky" like their dad....taller with muscular build, powerful football thighs, heavier than most of their peers. As middle school came to a close, we realized that our son was growing VERY slowly compared to his brother who is 2 years younger and was already 2 inches taller. His freshman year of high school, we noticed that his voice was not changing, nor did we see any peach fuzz on his face. When he turned 16 during his sophomore year, I decided enough was enough. Still no squeaky voice, no peach fuzz, and a height of 5'3" at the doctor's office....that put him in the 10th percentile for height among his peers! I asked our GP to test him for growth hormone deficiency, testosterone levels, anything that might give us some answers. He did, and more. He told me about a speaker he had just gone to hear at our local hospital (Dr. Fasano) and that our son's lack of growth could be due to celiac disease and that he would like to run a celiac test. I had no clue what he was talking about, but didn't care what he tested for at that point if it might offer some clues.
Our son's bloodwork came back with a high tTg which prompted our doc to order an endoscopy which came back positive with blunted villi. I spent hours on the computer reading, and specifically on this forum. I was fascinated! He never had the "classic" symptoms of digestive issues. In a year and a half after going gluten-free, our son grew from 5'3" to 5'9". Today, he is 20-years-old, stands just over 6' and is taller than his brother by an inch. As I have looked back over the years, I have recalled many things that I believe were caused by his celiac disease, such as a pretty severe tic that lasted for a couple weeks when he was five. He still carries a little extra weight, but he definitely slimmed out once he started growing. Try to be careful of the all the gluten-free goodies that are available these days and hopefully he will experience the same slimming as my son did.
I have been mostly gluten-free for about three years after finding out that our son, who was 16 at the time, has celiac. As the years went on I became increasingly convinced that I also have celiac disease (lots of symptoms and also finding out that my father had it). I made an appointment with a gastroenterologist and he has ordered bloodwork, but suggested that I wait until later this week to have it drawn so that my time on a normal diet will be right at a month. I'm wondering if it's a good idea to go ahead at this point, or if I should continue eating gluten for a few more weeks. I had read an article about a test being developed that didn't require a lengthy gluten challenge but I'm not sure that it's being used yet. Does anyone know for sure if my results would be valid at this point?
I'm sure you will get responses from some who are much more versed in this disease than I, but I would hedge a bet that they will recommend you request a full celiac panel be run. I have learned SO MUCH from this forum (and other sites), and one of the things I've read over and over again is that celiac disease and Hashimoto's are very connected. Your symptoms alone would be reason enough for me to push for further testing. Your rash sounds like it could possibly be dermatitis herpetiformis. If you haven't read the posts on that topic, you really should. There are even lots of pictures for you to compare. You could have a skin biopsy done to test for DH, but be sure to read on that so you know where the biopsy is supposed to be taken. If you get a positive result for DH, it's also a positive result for celiac.
Good luck! Keep us updated if you decide on further testing.
I've had spots that appear mostly on my hands, wrists, and arms for about 6-7 years now. I've also had them show up on my legs, tops of feet, my lip, elbows and occasionally my back. I always thought it was eczema or psoriasis, but am now wondering. The spots usually present as small, round dry spots that will grow in size but are typically barely raised. Generally, they don't itch much, are just very dry and rough. Occasionally, these areas will itch like crazy for a day or two, but then go back to just being a nuisance and quite unsightly. They are usually pink and dry, but sometimes will turn into a "lesion." When they are itchy, they are bright red/maroon. I never get the blisters that are typical of DH. My spots will last for months, and once they are gone the skin is white. Hence, I have lots of white spots up and down my arms. Biopsy of a spot on my leg was inconclusive, but doc said her gut feeling was that it's the early stages of psoriasis, that it can sometimes take years to fully develop. I've seen pics here that look very similar to mine, so now I wonder if I should have had it tested for DH (I know this must be done on clear skin adjacent to a lesion). But because it doesn't constantly itch, I also wonder if could be DH??
I have one area that I know has to be DH. It's at the top of my butt and tingles/itches before an eruption. While it's active, it itches like crazy, but can be tender if scratched or rubbed. It's always in the same place. If it rears its ugly head again, I will definitely call to have a biopsy done immediately.
Hi, Dgirl! Everyone on this forum knows you are not making things up, but many have been made to feel that way from their docs....and sometimes family. And after so many years, we can begin to wonder if it's all just in our heads, right? Even though we really know it's not....
I can't help you with the GI report language, but I can tell you this part of our story. Our oldest son was 16 at the time of his endoscopy, his only symptoms (that we realized at the time) were short stature and delayed puberty. Never any digestive issues. The GI doc spoke with me immediately after the procedure and said that VISUALLY, everything looked normal, but they had taken several biopsies. And the biopsies are where they found that he did indeed have celiac. We went gluten-free with him and he grew over 7 inches in less than 2 years!
I hate to say it, but I think it's a relief for many to get a diagnosis of celiac disease. Those two words can explain YEARS of pain, lots of doctor visits, and many misdiagnoses. I hate that this disease is unfamiliar to so many doctors, but it's the root of so many diseases and ailments that are -- and those familiar ailments are the ones that get treated while the real culprit goes undetected.
Hang in there and continue to be your own advocate. I think you could be on the right track!
We got results of my 12-yr-old daughter's blood work today. Everything was in the normal ranges except for the DGP, which was 37 units (<20 antibody not detected)(>or=20 antibody detected). Her CBC showed no abnormalities or deficiencies, so the doctor said he recommends eating gluten-free, but he will not diagnose her with celiac. He believes that she does not have full-blown celiac disease since there is no indication of malabsorption. Since the DGP is so specific, is it enough to go on to diagnose? Or is an endoscopy required as well?
I originally took her in because I suspected spots on her legs to be DH. They could not do a biopsy on the day we were there because of scheduling, so we set it up for today. Of course, the lesions healed beyond the point of getting a positive result (on adjacent skin), so I cancelled the biopsy. With no DH and no endoscopy, but a positive DGP, is the doc correct in NOT diagnosing her?
squirmmy, I've never heard this.....can you tell me a bit more? I've posted a couple of times in the last few days about my daughter having a "dry spot" on the back of her knee a couple weeks ago. She put a bandaid over it to keep from scratching and for her jeans not to rub. Two days later, the whole back of her knee was red and raw and itchy, so I told her to leave the bandaids off and to use antibiotic cream on it. It started to heal, but then she had more blisters appear down her leg. Now they look like large sores that have scabbed over. I'm intrigued by the bandaid thang!
Thank you, Mushroom! Yes, I do know about the testing site and mentioned it to the PA. He reacted as if he was already aware. If her skin continues to clear and she has no further spots crop up, I may cancel the appointment and wait for another outbreak. No need to make her go through the procedure twice....and I wonder if they would even do another biopsy if the first one comes out negative?? Stopping the antibiotics today!
About two weeks ago, our daughter showed me a spot on the back of her knee that she said itched really bad. I told her it looked like one of the spots I get on my hands, forearms, and occasionally on my legs and tops of feet. She put a bandaid over it so that she couldn't scratch it and it wouldn't rub on her jeans during school. A few days later, the whole back of her knee was a bright red mess! It looked to me as if it was irritated from the bandaids, but she said it itched. I told her to leave the bandaids off, put shorts on at home, and to put antibiotic cream on the area. It looked somewhat better the next day, but the day after that she showed me other spots that had sprung up down her leg! One on the front side of her knee was like a water blister and she broke it open. Now they all look like open sores and a few of them are the size of nickel or a bit larger. She also has a few spots on her other leg as well.
I took her to our PCP (had to see the PA) on Thursday, and he said it looks like impetigo. He suggested cream and an oral antibiotic. I re-emphasized our family connection to celiac disease (our oldest son, my father with definite dx; my sister, brother, and me with probably celiac disease but no dx) and insisted that I would like to have an updated celiac disease panel run on her as well as a skin biopsy for DH. He was not thrilled, to say the least. He wanted to give it a week of treatment and if it cleared up, all would be good. If not, then we could test for DH. I told him I didn't want to wait a week. They couldn't do the biopsy that day because of scheduling, so we set it up for Tuesday.
My question is: the spots are looking much better, so will the antibiotic treatment cause her to test negative? I read on one post that a steroid treatment would mean a negative result. The spots will definitely still be visible on Tuesday, but does that mean they're "active?" They are no longer draining, but still itch when she touches them. Should I have her discontinue the antibiotic cream and oral?
I am having her eat as much gluten-containing food as possible this weekend. I just don't want this to be a missed opportunity to find the culprit. I know most people go for YEARS without getting the correct dx, just like my dad. Words of wisdom??
I totally understand how you could relate every symptom to gluten! After reading hundreds of posts and stories on this forum as well as dozens and dozens of medical articles, I have come to understand that celiac disease can be the ROOT of so many other conditions and symptoms. And it can be so frustrating when most doctors want to treat superficially and only what they see on the surface. We were fortunate with our oldest son -- our primary care physician was in the early stages of TRULY learning about celiac when I took our 16-yr-old for his physical. He was 5'3", in the 10th percentile of his peers, was not growing, had delayed puberty, but no other symptoms (that we recognized at the time). My concern was the short stature (pituitary? thyroid? just the card he was dealt?). Our doc wanted to run blood work, but emphasized that he was ordering a celiac panel. Tests showed tTg of 70 (<20 negative), so endoscopy was ordered. The GI doc said visually everything looked normal -- but the biopsies came back positive. We immediately went gluten-free with him and he grew over 7 inches in less than two years!
In the last two weeks, our daughter has presented with itchy blisters on her legs that broke open, got progressively larger and more angry looking, and now look like open sores. Of course, our new doc (we moved last summer), says it may be impetigo. I insisted that she be tested for DH, but he wanted to give it a week of treatment and go from there. I said I didn't want to wait a week. So we are moving ahead with the antibiotics in case they are infected, and I take her back in in a few days for the skin biopsy. Personally, with our family history, I prefer to rule out celiac before we run the gamut of every other condition it COULD BE! He was not as convinced, obviously, but reluctantly agreed to what I wanted.
That's a long story just to say "go with your gut!" Even with just a little bit of research on celiac disease, it's hard to not to see every symptom as related. I share your obsession Happy!