• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Update To My Story
0

5 posts in this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


mushroom    1,205

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

Share this post


Link to post
Share on other sites

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).

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
gatita    32

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!

Share this post


Link to post
Share on other sites
Ads by Google:


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
      107,875
    • Total Posts
      938,426
  • Member Statistics

    • Total Members
      65,775
    • Most Online
      3,093

    Newest Member
    Faolán
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi guys, I had a really bad reaction to a certain brand of kefir yesterday. The reaction was neurological and I think it must have been an accidental glutening or an allergic reaction to an additive. The problem is I don’t know which ingredient had caused it. I was wondering if anyone has experienced a negative reaction to any of the following ingredients:      Locust bean gum E410 Apricot puree (further unspecified) Glucose fructose syrup Citric acid E330 Sodium citrate E331 Paprika extract E160c   I haven't listed the rest of the ingredients because they seem to be ok: e.g. milk, sugar.  Thanks
    • ennis how do you test for Candida overgrowth did I have to see a functional doctor or do medical doctors test. It would seem like a plausible  explanation to my symptoms. 
    • Hello everyone.    Ive been diagnosed with celiac for about 4 years now. It's been a rough road but I feel like I've gotten as good as I can get with eliminating gluten completely from my diet.    I am an undergraduate student with a driven passion to become a nurse (I'm a guy, I know). I love the field and can't wait to help people every day.   As some of you may know, the nursing curriculum is extremely intense. I have an very strict routine and schedule where I can handle the rigor of my classes, work, and fitness (I am really into health and fitness, it's the best release from the stresses induced from school. I get 6 hours of sleep on the dot and manage to work, volunteer, study, and eat decently well. I love my life when it's on this routine and am so happy and social with people around me. I'm making progress, I'm moving forward, making something of my life.    But lately I've been suffering. I've been getting sick a lot more often from what seems to be random uncontrollable cross contamination from various things. When I get sick, my routine gets all messed up, I fall off my schedule, and things start going downhill. I like to call it the "celiac rut" I get stuck in. When I'm sick I can't work out, without working out I get extremely stressed and can't sleep. Without sleep I can't focus on my school and you know, the slippery slope that pretty much leads to lots of depression and anxiety.    This. Absolutely. Sucks. I fall behind in school and have trouble focusing on my priorities because I need more sleep to heal, and I can't go to class or the gym when I'm throwing up or spending hours on the toilet. Plus the mental symptoms turn me into an angry antisocial gluten monster. So that's always fun.   I really don't know how to manage this. I feel like at this rate I won't be able to keep up with my daily life. I physically can not handle the lifestyle I have when I get sick, and it piles up because when I get better I'm like weeks behind in material in my classes.    I am am normally a super happy outgoing guy, I love being the person I truly am. But gluten is singlehandedly tearing my life apart and the depression is starting to take it's toll.    I honestly dont know what to get out of posting this. I just hope that someone has some sort of trick or secret to get through this awful "celiac rut."
    • Hello, I have the same issue with the hair loss a few months after going gluten free, I have been getting the b12 shot and was also told to take Vit D and Calcium, Also told it was because my guts are still not happy after all i put them thru, It's very upsetting losing the amount of hair I have, my right side of my head is about 65% thinner then the left...Was told it see a Diet person right away. 
    • There is sort of a detox/withdrawal thing for the first few weeks for most. Keep a food diary, often after a glutening a new intolerance will creep up for awhile. Sort of your body associating another food with gluten, and or it just being picky while damaged. Write down everything you eat, how you fix it, seasonings etc. Change up the diet, and look for patterns.  My own gut is being picky today and had D after 2 meals so I am rotating up and narrowing down the culprit tomorrow myself....only see 4 common things in my food dairy.
  • Upcoming Events