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

Other Related Diseases / Misdiagnosis
0

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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. :-)

0

Share this post


Link to post
Share on other sites

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!!

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
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)