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      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.

Other Related Diseases / Misdiagnosis
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4 posts in this topic

Hello all -

I am just glad I found this site. This is my situation.... my wife has not yet been diagnosed with Celiac Sprue, but she is showing all the signs for it and we are just waiting for a biopsy to take place. Since the age of 6 my wife has been diagnosed with, and treated for Crohn's disease. Well after several years of fighting Crohn's and not getting too far, she elected for surgery. After surgery, we both were excited because now her life was going to get back to normal and she was going to start feeling better. The only problem was, something was still not right. Then, upon another doctor appointment, and more blood work, the doctors were still puzzled. Then, my wife happened to mention a certain sympton (dryness inside her nose) and a light went on with the doctor. She immediately thought of Celiac Sprue and is having my wife checked for it. She will be having a biopsy in the upcoming months. Now we are not sure if my wife does have it, but we are starting to prepare for it. (Hence me finding this website)

For starters, has anyone else had this situation of a misdiagnosis for so long?

Why is this disease not commonly checked for?

And third, I have heard that this disease could be a cause of Crohn's?? Is that right?

Needless to say I am in need of more information, and will continue to research as much as I can. I know very little other than a change in diet can solve it.

Other than answers to my above questions, I am not sure what I am looking for. If you have any similar situations, or know of someone else who was also diagnosed with Crohn's I would be glad to hear about it. I must also mention that it is not fair for me to say my wife was misdiagnosed with Crohn's. She did have Crohn's, it is just that I have a feeling that maybe if she was properly diagnosed at age 6, then the Crohn's may or may not have ever shown up.

Thanks and I will keep researching. I have a very small knowledge on the subject so far.

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Dryness inside the nose? Is that a symptom of gluten intolerance? How interesting, I have had that for some time now and could never understand why. My DDIL suggested that I be tested for gluten intolerance as her daughter/my granddaughter has celiac disease and I have these conditions: migraines, a chemical depression, fibromyalgia/pain. Sure enough, I have a gluten and casein intolerance after being diagnosed through Enterolab (who I recommend highly). It will be interesting to see if the dryness inside my nose goes away now that I am eating gluten-free/cf!!!!!

I hope that you keep with your quest to find out if your wife needs to be on a gluten-free diet. It really isn't all that bad...however adding the cf thing in there really puts a crimp in things. Eating out is harder, at home the gluten-free thing is a snap. Many people are diagnosed with IBS and Chron's and really have celiac disease. Best wishes to you, be sure to stay with this board, I have learned so very much, including how to get properly tested through Enterolab. I will be ETERNALLY grateful for that.

Barbara

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While I wasn't so sick nor experienced misdiagnoses, the _average_ length of time before a diagnosis is made in the US is 10 years. Part of the reason is that doctors don't look for it because they were taught that it's very rare, that it's a children's disease, and that you've got to be thin as a rail, having constant diahhreah, and nutritionally deficient to have it. Why are they taught that? You'd have to ask the medical schools...

Good luck to your wife with the biopsy (don't forget she needs to continue eating plenty of gluten before the test), and the diet - while a big adjustment in some areas - really isn't too hard once you get used to it, even if it can take a while to get used to it. :-)

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I am intersted in knowing what more you have found out Cowboy! My brother in law was diagnosed with Crohns and had surgery about 4 years ago. He still has problems. The only thing he lives on is chicken, noodles, gravy and bread! It all makes sense now. My husband has started having signs of Celiacs. He has been tested for Crohns and it came back negative. Hope your wife is doing better!!

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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
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