Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is Diagnosis Necessary?
0

14 posts in this topic

Hi all, I am very new to this site as well as the celiac and gluten-free world. I have not been "officially" diagnosed. Apparently a diagnosis can be very hard to get. I have had the worst symptoms since last March following the birth of my second child. I have been seeing a gastroenterologist. I've had an endoscopy, colonoscopy, ultrasound, small bowel follow through all completed. All results within "normal" ranges. What gives? I've had what I've called IBS since childhood. My symptoms that have become extremely evident over the past year are as follows:

Diarrhea

Vomiting

Abdominal pain/cramping

Extreme bloating

Excessive gas

Geographic tongue

Headaches

Fatigue

Chipping/cracked teeth

Psoriasis on my hands and upper thighs

Intestinal sloughing

I've had most of these symptoms for a long time but they have all become part of my daily life in the past year. My PCP is clueless. He is very kind but just wants to write prescriptions for anything under the sun to mask the symptoms. He gets upset when I don't fill the prescriptions. I don't want to cover up what is going on, I want it solved and treated properly. I don't think there is anyone in my family with celiac disease so my doctor is quick to throw it out the window because he says it is hereditary. During the colonoscopy they did do a biopsy for celiac sprue(sp?) but that came back normal as well. I can't live like this any longer. I have been so down and out. I have two young children and I never intended on parenting from the couch! So upon doing my own online research and reading about celiac disease, I decided to give gluten-free a try. Within 24 hours the bloating and stomach pain vanished! Within 48-72 hours I was feeling like a whole new woman. I seriously have not felt this good in a loooong time! Now, I'm only on day 8 of my gluten-free experiment but I can't believe how good I feel. I'm being super vigilant about what I put in my mouth. I've also been keeping a food journal to show my doctor. My PCP told me to go with my gut (no pun intended lol) and follow the gluten-free diet to see what happens. I understand now further testing wouldn't have true results because I am no longer eating gluten.

My question to all you seasoned celiacs or parents/family/friends of such: What would you recommend I do next? And is an official diagnosis necessary? If I feel better and symptom free following a gluten-free lifestyle, is that good enough? At the end of a certain time, a month or 6 week+ gluten-free, should I reintroduce gluten to see what happens? Please let me know what you all think, I'm open to any and all advice. Thank you so much!

0

Share this post


Link to post
Share on other sites


Ads by Google:

If you were to have the blood work drawn in the next day or two you may still get a positive result. If you wait until two weeks gluten-free you are less likely to get an accurate result. If you resume eating gluten now and have the test later, you will know. I know that you may not want to do this and I understand. However, whether or not you get the diagnosis is up to you entirely. If you know that gluten causes you problems then you know that you should not eat it. Be aware that if you go back to eating gluten after some time off it, your symptoms are likely to be more severe. You might get away with it if you resumed now - or you might not.

Your other course of action, as you say, is to remain gluten free and then do a gluten challenge. If your PCP is on board with this plan, and you can show him your food and symptom diary, will he be willing to diagnose you on the basis of symptoms and positive response to the diet? That is, if you feel you need the diagnosis. Because no one needs a diagnosis to eat gluten free, nor a doctor's prescription. There are situations when it comes in handy, such as if you are hospitalized and need a gluten free diet provided. The medical profession tends to frown on self diagnoses and trust only what they have seen with their own eyes :unsure: For example, I once consulted an orthopedist to whom I took my records and x-rays of a foot fracture, and he stated in his report, "She apparently sustained a fracture...." :lol:

Incidently, I am 'undiagnosed' and suffer from psoriatic arthritis.

Your symptoms certainly sound like celiac, or at the very least non-celiac gluten intolerance; it really doesn't matter which in the long scheme of things because the 'cure' of the gluten free diet is the same. Until research catches up, the only difference it would make at this time is that celiac is genetic and we are not quite sure if gluten intolerance is or not. But either way you should watch for symptoms in your children.

Welcome to the board and best wishes in deciding a course of action.

0

Share this post


Link to post
Share on other sites

I am also undiagnosed. I too have PsA. I am gluten, dairy, soy, peanut, sulphite free. I eat very little sugar, lower carb, and there are many food items I can have on a very minimal basis. My youngest son had very loose stools after moving onto dairy and solids. I did an Enterolab and had him tested for Celiac. Celiac came back negative Enterolab had positive gluten reaction. His Pediatrician says he just has toddler diarrhea and I got in contact with an MD who practices Functional Medicine and he totally pushes a gluten free diet for my son (which I am doing). So even though he isn't diagnosed I am not taking chances especially after my roller coster ride dealing with AI issues for much of my life. I am no longer on medication and that is enough proof for me. BTW, my GP said diet had nothing to do with my condition. Shakes head.

0

Share this post


Link to post
Share on other sites

As a parent, a downside of not being diagnosed is that docs won't take it as seriously in your kids. But that doesn't mean they can't get proper diagnoses if necessary. As an adult, there isn't a lot of *need* for a diagnosis, particularly if you feel comfortable sticking to the diet without someone else giving you a "formal statement" that you have celiac.

0

Share this post


Link to post
Share on other sites

I'm hopeful a diagnosis will mean something for an adult in the future. It apparently doesn't mean much to nursing homes and hospitals right now. But maybe in a few years, they will be required to feed patients based on a diagnosis.

0

Share this post


Link to post
Share on other sites




Since you already have had the innards examined, maybe go quickly as possible, insist on having someone draw blood to run the celiac panel, and call it a day. If the results of the blood test shows up negative, so be it, call it gluten intolerance, and stay gluten free. You're done. You've tried. You can get a genetic test, but that just shows whether or not you are in the 30% of the population which carries the genes which are the most common to those who do develop celiac - that's not a slam dunk, either. Yes, it's hereditary, but most people with the gene(s) DQ2 and DQ8 still don't develop celiac (yet.... who knows what will happen in the future). But those who do develop celiac are very likely to have one or both of those genes.

Unless you also had neurological symptoms, if that is bad enough, if you persevere through several years, several different doctors and insurance plans, you might finally get a brain scan showing damage - but that doesn't mean the doctor will acknowledge it as celiac damage. So you are sort of left out there by yourself with your ability to research and match symptoms, unless your doctor is pretty cool, and fascinated when you tell him about this and he sees the scan results. :) Perhaps no "official" diagnosis, but an unofficial one. Your doctor did say to "follow your gut." Or your rash may turn out to be DH, which can be confirmed with a skin biopsy, and that usually gives a celiac diagnosis.

For the future, you report back to the doc that the gluten free really helps, then you can go about being a "gluten intolerant." Sometimes one just has to be a trend setter. ;)

0

Share this post


Link to post
Share on other sites

Thank you all for your input! I am definitely going for the blood panel! ASAP. This board is so helpful, I'm amazed. Thank you.

0

Share this post


Link to post
Share on other sites

biopsy during a colonoscopy is NOT for celiac. Hopefully it was done during the endoscopy?

0

Share this post


Link to post
Share on other sites

I was about to start a new topic on, basically, this topic, so I hope the OP won't mind if I ask my question here too. My husband went gluten-free several years ago before either of us knew anything about celiac disease except that it existed and that the only cure was being completely gluten-free. We didn't know that it would be almost impossible to get a diagnosis once he was gluten-free.

I think a clued-in doctor would probably concur with our diagnosis because he has/had so many of the classic symptoms (including iron deficiency, short stature, dental enamel damage, mouth ulcers, mysterious skin rashes, in addition to GI symptoms, depression, fatigue, etc) AND most of all, because celiac disease runs in his family. But as you all know, it's basically impossible to get an official diagnosis without the dreaded "gluten challenge" --which he simple cannot and will not do --even very minute amounts of gluten make him sick for days now, so the idea of eating gluten for 3 months or whatever is totally out of the question.

I see some of you are saying that a diagnosis isn't necessary for an adult, but I feel like he isn't getting proper follow-up care without a diagnosis --testing for related conditions, etc. What would you all recommend? I should add that the various GPs, etc he's consulted over the years (and even one GI specialist) were completely unhelpful, despite being in two European countries where celiac is very common.

thanks for any ideas!!

0

Share this post


Link to post
Share on other sites

Some are great believers in follow-up care for celiacs; others not so much. I guess I belong in the not-so-much category. So long as you make sure to keep up your Vit.D and other nutrient levels (because some of us remain to a degree malabsorbers) and are sure you are adhering to a gluten free diet, there is really not a lot of follow-up needed. For most, the risk of acquiring other autoimmune diseases or bowel cancer retreats to the levels of the rest of the population after 5-10 years gluten free. You should of course stay alert but there is not really much else that a doctor is going to look for except compliance with the diet by blood tests. It is rather like me as a former smoker; I am aware that I do still have a greater potential for lung cancer even though my smoking days are so far back in my past I barely remember them - only the agony of quitting :D So a "glassy" spot they found on my lung needs following up next month; but I don't consider myself at greater risk for anything else because of smoking.

But how much follow-up care we need is a decision we all have to make for ourselves. I am sure others will weigh in with their opinions.

0

Share this post


Link to post
Share on other sites

I am new to the site as well and am undiagnosed. I have similar symptoms which most people tend to blow off and think it's all in my head which really aggravates me. I too feel better on a gluten free diet! My bloodwork came back showing everything was normal. I'm just going to stick with the forum here, read as much as I can and learn more about it, and try to continue a gluten free diet so long as it makes me feel better. Good luck and stick to what makes you feel good. That's what I am doing.

0

Share this post


Link to post
Share on other sites

I'm new to all this too. I have had stomach issues for about 4 years, though, and thought it was my gallbladder. Everyone keeps saying the pain from the gallbladder is upper right quadrant, though, and mine seems to start on the left side of my body. It's almost as if a balloon blows up in my stomach and tries to continue to blow up. Sometimes if I catch it early enough with GasX and lots of water, I don't have tremendous pain, but yesterday i had a really bad bout that kept getting better and worse. I took a Vicodin which seems to help the pain and it took the edge off enough for me to think that was the end of it. But, oh no. I ate a slice of sourdough bread and the pain returned...with a vengeance! That's what got me to thinking that it might be a gluten intolerance. I haven't been diagnosed because I don't have insurance nor money to go the dr route. I went about 3 years ago to a gastroenterologist and he did some liver enzyme tests and told me that the next time I came in, he'd have to do other tests. So, I didn't do anything and I keep having these horrible stomach issues about once every month or two. Since I thought it was gallbladder, I cut out red meat and fried foods, but that apparently hasn't helped since I had the pain yesterday. Do you know of anyone else who thought the pain might be gallbladder?

0

Share this post


Link to post
Share on other sites

Hi Kitty,

Several members (or more) have had their gall bladders removed. Seems to me like gall bladder issues are one of the side affects for some celiacs who aren't gluten-free yet. I have had pain in my left side in the past, not gall bladder though. My pain took about 9 months to go away after going gluten-free.

0

Share this post


Link to post
Share on other sites

To Kitty, many of our posters have had their gallbladders removed before they ever get to the diagnosis of celiac, with no relief. Many others have experienced improvement in the condition of their gallbladders after going gluten free. Yet others find that their supposed gallbladder pain is not really that at all. Do not be in a big rush to attribute your problems to your gallbladder. :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,352
    • Total Posts
      917,435
  • Topics

  • Posts

    • Daughter with celiac- need test result help
      Tell me if I'm going overboard- but I feel like she could be getting glutened from trace sources on surfaces. I'm a crazy person over it, like extreme germaphobe only it is gluten not germs. She's supposed to wash her hands and wipe the table before she eats. Being nine she's not always going to do that if I'm not there reminding her. Just an an example, we were at a birthday party recently. The kids ate pizza (my daughter ate her prepackaged gluten free pizza I brought). With their hands greasy from pizza they played a bounce a balloon game, where they all had to keep one balloon from hitting the floor, then sat down to cake. I sat in shock then made my daughter go wash her hands again before eating cake. Major crazy mom, but not really right? 
    • Testing After Celiac Disease if IgA deficient
      Is Tissue Transglutaminase IgG one of the tests that can be done (I am guessing that is what TTG IGG stands for). Please correct me if I am wrong.
      Thank you.
    • Weird Reaction
      I'm afraid to say I don't really think it is normal Richie, but I do recognise the shakiness and nausea you speak of, as I've been there. (Pre-diagnosis), my shakiness was so bad, my muscles were very weak and couldn't walk without the aid of a walking stick, my ferritin levels were so very, very low and had to take iron tablet every day for months. My hair was falling out, I had really bad digestional issues, amongst other things. I think you should lay off the coffee and the barley drink and all gluten/wheat, because until you do, your body is not going to repair itself properly. Damage is done to the gut even if you don't have gastrointestinal issues, as not all coeliacs have symptoms, but the damage is still being done to the gut, which in turn can cause osteoporosis, other auto-immune diseases and also cancer.  If you ever get a test for coeliac disease, you need to be eating gluten/wheat for at least 6 weeks on a daily basis in order for it to set of the immune response in your body, which will cause a positive result. (Blood tests are less reliable than endoscopy with biopsies - bare this in mind).  You may decide of course not to have a test for coeliacs because of how ill it could make you feel by eating gluten etc. In which case, you need to avoid all gluten and wheat forever! (By the way another symptom of coeliac disease is dairy/lactose intolerance- which could be causing your nausea). Sorry to be blunt, but you need to know the dangers and there's no point in sugar coating it. What is your fasting blood test for? 
    • Take #60forCeliac this May for Celiac Awareness Month
      Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need a cure. Experts agree that if we work together, we can make it happen in under 10 years. View the full article
    • Simple Kneads Gluten Free Bread
      The first thing you'll notice when you visit the Online Bakery at SimpleKneads.com is that this gluten free bread doesn't look like other bread.  It looks beautiful. And it certainly doesn't taste like other gluten free bread, either.  It tastes like real bread. View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,486
    • Most Online
      1,763

    Newest Member
    Trace66
    Joined