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Other Related Diseases / Misdiagnosis

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.



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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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    • It took me years to be diagnosed.  I've been misdiagnosed with several different things and knew that there was more to it.  I requested to have an egd to test for Celiac's two years ago, my doctor never called me back so I went low gluten from then on.  I still felt like hell because I didn't realize that "everything" has gluten in it....  My daughter became ill back in March.  I went to several different doctors trying to figure out what was causing her to be ill.  Our family doctor said she had gallstones, wanted to immediately do surgery on her.  I refused since she didn't fit the typical signs of a child with gallstones.  I requested a pediatric surgeon and then a pediatric gi dr.  The surgeon was smart enough to say maybe ask the gi dr to test for celiac disease....  Then it clicked.  I was so angry and mad at myself and my dr for not listening to my body for the past several years. Her blood test was negative, but the biopsy was positive.  She went on the gluten free diet.  I then said I wanted to be formally tested.  Blood test was negative, biopsy was positive and they ran the genetic screening.  I am a DQ2 homozygous, cat 8.  My doctor apologized to me over and over.   I have two sons that were tested for their genes, one is a cat 4 and one is a cat 2.  If they start showing signs of the disease they will be tested by way of egd.  Their pediatric gi said that I probably would've died by 40 if I was left undiagnosed.   So in saying all of that, fight for your test.  Listen to your body, but don't stop living.  Use this as a teaching tool.  Help others that don't understand the disease.  It'll be tough but you can do it...
    • Hi, thanks... Yes, I was diagnosed with glucose intolerance by an endocrinologist. That's when I started cutting back on sugar. Other than some deficits (chromium, testosterone, D + B-12) they found nothing. Except that I also have mild ostopenia, and I often get kidney stones which is strange but they told me not to worry about it and to get more exercise etc. Which is exactly what I've been doing. I can tell you, banning gluten and sugar from my diet is the best thing I've ever done in terms of diet. The pounds came right off. But don't worry, I'm not a walking skeleton yet, lol. Fortunately the weight loss is a result of my diet, I had problems losing weight before the diet and even when exercising. But it all makes sense now. I easily store carbs as fat and have a hard time losing them. I still have the intolerances though... I had a high white blood cell count but they thought nothing of it. It all points to inflammation in my gut somewhere. But hey they're the doctors if they tell me not to worry about it I'll just have to try and figure it out on my own I guess. Meanwhile I'm really happy to see the belly blubber disappear.  Cheers
    • Also, I know that the DQ2 is the most common one representing celiac disease.   I have low IgA-35 and my DGP Igg - 34.8 (medium to strong positive is greater than 30) All the IgA labs were within range. I have Hashimoto's as well. My vitamin D level is 23. I guess I'm wondering how likely it is that I have celiac disease.  The genes I have are not the worst ones to have, I believe, and while my DGP Igg is high it's not crazy high.  I'm still awaiting a call back from the GI as the PA told me to go gluten free for two weeks and then reintroduce it (this was last week while the GI was out of the office).  I guess I'm wondering what the point of that really is... Thanks again everyone for your help and advice as I navigate this...
    • Do you have any diagnosis from a doctor?  Weight loss like you are describing could signal a serious issue that you shouldn't be messing around with.
      You shouldn't be cutting out all of those foods without going to a doctor to figure out what is going on.
      A doctor would be doing testing to make sure nothing serious is going on.
      I'm the first person to say I haven't found a good doctor and I'm suffering with serious pain and issues because of that so I am altering my diet, but I'm following up with the doctor.  So if you haven't schedule an appointment with a GI doctor or some doctor.
    • Back on the gluten foods for about a week now and it's hell, if there was any doubt that the blood test wasn't accurate I can say with unerring certainty now it's definitely gluten causing the problems. The headaches, muscle pains, sore throat (reflux no doubt) and general feeling of malaise all back with a vengeance. As predicted it's worse this time round having done gluten-free for a while and no doubt same will apply in the other direction in 3-4 weeks' time. On the verge of giving up all hope now and this is before I find out how shredded my insides are followed by the further kick in the guts of discovering cross reactivity. What point is there carrying on if the future is this painful, lonely and miserable
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