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Update To My Story
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It's been a little while since I've posted here. I have been completely exhausted and still going through testing and stuff. Finally have a diagnosis. Sort of. He said this is what I have, but I think he may have just been looking for a quick answer. Crohn's is one of the big digestive problems they treat. For all I know it could be something similar. I just hope my future isn't as full of as many complications and surgeries as most crohn's patients.

My husband and I are a little skeptical because I don't fit the description as well as we would expect, and we think the doc may have just looked for a common disease without being sure. That sure makes things easier for him. We are both afraid of what is to come if it is indeed crohn's. The folks over at the crohn's forum have been absolutely amazing! Just like here. :D Anyway, looking for a new GI doc because I don't feel I'm connecting with him. I asked for nutrient testing and he blew it off. I don't know. Maybe I'm expecting too much to think by now a physician would have wanted to see if I'm absorbing nutrients from my food. Thought that would be one of the first things checked when going through testing for a digestive problem.

Also, I had previously posted about an unsupportive spouse. Things have improved alot! He is finally growing up and realizing he can't be like a grown kid anymore. I think his mom's visit a few months ago really helped, too. He now thinks about US instead of HIMSELF when he plans things and looks to the future. As for the gluten free stuff, he is much much better about it now. He still rolls his eyes when I talk about certain cross contamination issues, but understands it for the most part. Otherwise he asks me about what I can and can't eat. He still complains that it's hard to make things for me to eat because I'm so restricted, but then he tells his family that it's actually really easy. What a turd. I try to stick to a whole foods diet, with a lot of room for improvement. :rolleyes: We can go out to eat, and he doesn't roll his eyes when I ask for a gluten-free menu. He also lets me pick the restaurant, so I know that I can safely eat. And, a big surprise- he leaves generous tips because of them making sure my food is safe. He has always been a poor tipper. There are still some areas in need of improvement, but it has come a long way. Maybe we will even get to the point soon where we can start a family. I have the itch, horribly. Have had it for a few years. I'm 33 and don't want to wait too long, but if things aren't right with us, then kids have to wait. Simple as that.

Hope everyone had a great New Years! I surprisingly made it past midnight. Usually I am asleep by nine on the nights I don't work. Just a tired girl. :P

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On what did he base his diagnosis of Crohn's disease?

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On what did he base his diagnosis of Crohn's disease?

Biopsies from colon/endoscopy and pillcam results. None of my bloodwork is positive for typical crohn's, though. I have no inflammatory markers, and my sedimentation rate or whatever that was is normal. Biopsies and pillcam showed chronic inflammation that the physician could not visibly see through the camera. And images of the small intestine showed multiple apthous ulcers with the majority of them being in the ileum, one of my most painful areas. And all this time I thought that pain was appendectomy scar tissue. My other painful area is pretty much a line going across around the belly button.

I have no bloodwork supporting anything. All tests run have come back normal- celiac (they never ran a full panel, too late now), crohn's, metabolic panel, and kidney. The only tests I have ever had out of normal range in my life have been thyroid related, with the exception of borderline low glucose (fasting and non-fasting).

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Thanks for the update. I hope you get your situation understood and helped. I am thinking of seeing some kind of Celiac Expert, but it would have to be someone with a natural bend. My chiropractor has really helped me with supplements and testing. That is Ann Zilka DC. She is located in Richfield, Mn.

A doctor in Mankato has helped my son. He is Osteopathic. The clinic is Between the Bridges Healing Center. His name is Jeff Kotulski. His title is Osteopathic doctor. My son had damage of the small intestine from parasites and Dr. Jeff was able to help him. One of the things I liked the best was our last meeting. He got really excited to see the improvement in my son! I need a female doctor, or I would enlist his help with me.

I want a specialist since I currently have no objective way of tracking progress and would go in to attempt to get one.

I love children, so I can relate to desiring them.

Diana

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Oh my goodness that must be frustrating. I don't know much about crohn's but understand that gluten can be a problem for may crohn's sufferers, too, so perhaps going gluten-free would help that too? I wish you had a clearer diagnosis, but it's great that the crohn's forum people are so supportive -- like here.

I'm also glad your man is getting on board and hope he continues in that direction!

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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