IS IT Crohns , Celiac or ?????

[mreyn]

Ok, so for a year now.. we didn't know what was wrong, then he was diagnosed with Crohns in december, then new gi dr .... did blood tests in march... I asked for a visit a couple weeks ago to check on things because my son is not better and I still am not convinced its crohns. the first thing they told us was that some of the blood tests, etc are not suggesting crohns.

Geez,, seven months??!! REALLY??? Make my child suffer with no diagnosis now? NOW They want to rescope, biopsy to look for celiac even though every celiac panel he's had says negative.

His main problems have been vomiting... dark around eyes, losing weight, anemia, low prealbumin, high lactoferrin and in the beginning, fevers and spitting up mucous. Does ANYONE have a clue what this is???? I'm wondering if I should take him to an allergist/immunologist??

 

[David]

I'm so sorry you're having to go through this

*hugs*

HOW was the Crohn's initially diagnosed? Biopsy? Some other means? What makes you question the diagnosis?

There is also a pretty good overlap of the two. It's quite possible to have both.

With his current symptoms I've got to wonder if they've tested other vitamin and mineral levels? Vitamin B12 and magnesium would be big ones but I can list a dozen. With low prealbumin we know his nutritional status is compromised.

The dark circles around his eyes is likely due to the anemia.

 

[Gianni]

What an awful experience, I hope you get your answers soon.

My blood tests also came back negative for crohns but my biopsies came back positive. My doctors told me that it is fairly common to come back with negative blood and positive biopsies. That is horrible that the doctors are doing a back and forth, I don't think they realize the emotional toll it can have on children and parents new to the disease.

As for the other problems, David brought up great points about vitamin and mineral deficiencies. It seems like all of those can be helped through supplementation and a healthy diet.

Hang in there!

Gianni

 

[mreyn]

Originally was diagnosed by pediatric gi due to symptoms, and ileum being ulcerated/inflamed/friable....... new dr says he is not convinced its crohns. I read thru all his tests, and his first ones said moderate growth of staph... I actually found articles, and one in particular, where crohns was diagnosed when it was actually staph.. I also found 3 pages of things that are routinely misdiagnosed as crohns. I'm just not sure where to go next. I hate to have him go thru the same things over and over. Rescoping and biopsies next week again...

 

[kiny]

Transglutaminase test and anti-gliadin test will show if he has celiac in like 2 days with a blood test. What you describe just sounds way too serious for just celiac but nothing is stopping you from doing the test for celiac, it's a very simple test.

Intestinal tuberculosis is often confused with crohn's disease, but then the rates in the U.S. are very very low (which I assume you are from since it says Texas), crohn is far more common, a biopsy should be able to differentiate between crohn and TB.

I think it's important to remember that crohn is not simply one disease, immunoglobulin reactions are too different. Maybe some doctors still clasify crohn as a single disease, but that's been untrue for a while now, even though clinically all people with crohn show intestinal inflammation, the immunoglobulin reactions differ greatly from person to person. In the first cases anything that was not intestinal tuberculosis was referred to as crohn's disease (or chronic intestinal enteritis to be more precise, the term crohn's disease came later), since then they find more and more immunoglobulin reactions in teh blood, which point to multiple diseases all referred to as crohn's disease. Crohn's disease is not 1 single disease.

 

[Sascot]

Wow, how frustrating for you. Not nice to have to go through the colonoscopy again as well! Hope you get answers soon so your son can feel better soon!

 

[my little penguin]

Hugs... We went through the is it or isn't with DS .
He also had a lot if stomach issues and vomiting.
Three scopes three gi's and many meds later he does have crohn's .
He just didn't have the right meds since every one is different.
Once we got the right meds the vomiting stopped.
As far as celiac the blood tests are good but biopsy is the good standard.
I assume they are doing an upper and lower scope.
If not ask why.....
With vomiting you want to rule out egid disorders as well as celiac and crohns not just lower stuff .
http://apfed.org/drupal/drupal/index.php


Good luck

 

[mreyn]

Thanks everyone. It really helps to be able to get different advice. Yes, they will be doing both upper and lower scopes .... AGAIN.... and biopsies.... AGAIN. I've always heard that crohns runs in families, and no one in our families have it. KINY, or anyone else who can give advice... I have been researching online for over a year now and have 3 pages of things that mimic crohns. I've also read that leaky gut is basically what the problem is for all of the intestinal problems with names like crohns so I agree with you wholeheartedly. We took him to a natural dr who said leaky gut can be healed and will fix all the other problems. I tend to agree with that also since no one knows what causes these problems ... how can they say there is no cure? My next step , I believe, is to try to utilize some of crohns dad suggestions like ldn, boswellia, curcumin.... And some of crohnsboy suggestions... including colloidal silver... which kills everything bad, lol. As far as the dark eyes being from anemia.. he's taking a liquid all in one multi that includes iron, so I'm guessing that will help. The iron pills were too rough on him. I've also read someone suggest angstrom iron.

Thank you all for the support. This forum has helped me cling to what little bit of sanity I have left. My son has not gained one pound in 7 mths... and it's very tough watching him go thru this. I'd take it in a heartbeat.

 

[Gianni]

Thanks everyone. It really helps to be able to get different advice. Yes, they will be doing both upper and lower scopes .... AGAIN.... and biopsies.... AGAIN. I've always heard that crohns runs in families, and no one in our families have it. KINY, or anyone else who can give advice... I have been researching online for over a year now and have 3 pages of things that mimic crohns. I've also read that leaky gut is basically what the problem is for all of the intestinal problems with names like crohns so I agree with you wholeheartedly. We took him to a natural dr who said leaky gut can be healed and will fix all the other problems. I tend to agree with that also since no one knows what causes these problems ... how can they say there is no cure? My next step , I believe, is to try to utilize some of crohns dad suggestions like ldn, boswellia, curcumin.... And some of crohnsboy suggestions... including colloidal silver... which kills everything bad, lol. As far as the dark eyes being from anemia.. he's taking a liquid all in one multi that includes iron, so I'm guessing that will help. The iron pills were too rough on him. I've also read someone suggest angstrom iron.

Thank you all for the support. This forum has helped me cling to what little bit of sanity I have left. My son has not gained one pound in 7 mths... and it's very tough watching him go thru this. I'd take it in a heartbeat.

Hi again,

Yes Crohn's can run in families but it has to start somewhere right? I was the first in my family ever to have Crohn's or any autoimmune disease for that matter. It seems like my generation keeps popping up with hereditary diseases with no sign of the disease in the family. When i was first being diagnosed i also researched many of the different ailments that are often mistaken for crohns, unfortunately I had crohns all along.

I too am someone who believes this disease can be cured There are only a few of us on this forum but you make a great point about if they don't know the cause how can they say it isn't curable! Anyways here is my opinion on the best treatment plan, and the best way to cure (in my opinion). http://www.crohnsforum.com/showthread.php?t=41838 (Click that).

As for naturopaths. Some naturopaths are amazing and make sense. Others are stubborn and some just make no sense. Hopefully he presented evidence when he told you that his condition can be cured. Its best to research online and find a highly rated naturopath and surprisingly enough many naturopaths specialize in crohn's

All the best

Gianni

 

[kimmidwife]

Be careful with colloidal silver it can turn your skin permanently silver. I used to use it a lot until that warning went out. Also caitlyn is the first in our family to be diagnosed with crohns. Like Gianni said it has to start somewhere.

 

[mreyn]

Thank you guys!! We have a friend whose entire family uses silver and they have never been sick. I researched about the "blue" thing when it came out and I can't remember now what the reason was, but really it's not a big problem. I believe Crohnsboy also said something about it in his ebook. Everywhere I researched on Crohns, silver kept popping up. ( it also pops up when dealing with cancers, etc.. I guess depends on where you look) Thank you, Thank you Gianni.

 

[Farmwife]

mreyn we use silver. My son and I get chronic sinus infection. We ALWAYS had to go the the docs. He gave us the silver and both of us use it when we're ill and it's never gone into infections. You should know that it DOES kill the good bacteria BUT NOT nearly as much as regular antibiotic. Once my Little Grace stable she'll use it when it's needed.