• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
0
maggiesimpson

Update To My Story

Rate 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:


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

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
      108,916
    • Total Posts
      943,494
  • Member Statistics

    • Total Members
      67,094
    • Most Online
      3,093

    Newest Member
    brienzi berni
    Joined
  • Popular Now

  • Topics

  • Posts

    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  • Upcoming Events