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

Do I Belong Here? How Do I Cope?
0

3 posts in this topic

Hey all,

I 've been lurking in the shadows here for a while and am now desparate enough to post.

I've been thru the blood tests and they are negative. Awaiting biopsy results from the small bowel biopsy test. But my GI doesn't think I have it. But I have all the symptoms--can't eat large portions (no more than a cup of anything at a time), constipation, lactose intolerant (my whole life), I know I am wheat intolerant, gut cramps, intenstine cramps, the WORST bloating I have ever had that refuses to go away and now I'm starting with nausea. I've been trying to follow the gluten-free diet and haven't gotten any relief. My GI said I "probably" have IBS but didn't see anything concrete. I have cut out all the junk and work out 3x/week. I don't drink, smoke or do drugs. I am a vegetarian. It's to the point of I think I've gone crazy b/c there's techically "nothing wrong."

So, what have you tried? Any food plans you'd recommend? Tips on IBS?

Thanks for your help. It's great to know I'm no longer alone.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi and welcome to the boards!

First of all you are not crazy and apparently something is wrong as you should not feel that kind of abdominal pain.

Do not get discouraged if your biopsy / blood test come back negative. Sometimes it takes time for a disease to show up in the blood or damage your villi. It also depends on how many biposies the doctor takes and if gets the area that is damaged.

How long have you been gluten-free? Are you sure you are 100% gluten-free? Sometimes it takes a few weeks/months to see a huge improvement (in some people). Also there is a chance you could have other intolerences in addition to gluten.

Here is a link that may help you become 100% gluten-free, I would also stick to the basics, nothing fancy.

Safe and Forbidden Food and Ingredients ** this list has all the things you may not think about looking for on labels**

gluten-free food list ** must have adobe to view this link **

I hope you feel better soon. Feel free to ask any other questions you may have. Take care :)

0

Share this post


Link to post
Share on other sites

i'm sure you're doc is trying to rule out other things as well, right? Maybe you have another kind of intestinal disorder.

Hopefully they will find out what is wrong and help you!

We all know how you feel. And, it takes awhile for your symptoms to go away. Don't get disheartened if you don't feel better right away. I read that for some people it can be like, a year or two (let's hope that's not us!).

But be vigilant about it and hopefully you will feel 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
      103,874
    • Total Posts
      919,422
  • Topics

  • Posts

    • So I've been glutened....
      Hi JMG, Since it's easy, and always fun, I'd blame your sister. That's what I do.  But seriously, if it's an ongoing problem, rather than an isolated incident stick with your first guess.  Then test it.   So get rid of the oat bread or the sister (her food) or anything that is a consistent part of your diet and you suspect could be the problem.  Of course processed foods are the most likely issue always. It's easy enough to drop back to a very few foods for a few days and see if things improve.  Eating with celiac isn't about having the most exciting diet, it's about eating a medically safe diet.  So it can be boring sometimes.  That's ok, being in pain is exciting but not so fun.   Boring is fine. You might ask your sister what brands of flour she used, and other ingredients.  Then check on those products for possible gluten issues.  If they turn out to be possible problems, make a note of it so you can avoid them in the future. My own sister has been gluten-free for years but she has made me sick several times with her "creations".  It really is best to trust your own cooking and nobody else's for at least 6 months as you are getting used to the diet and healing.  Then slowly branch out and add things in maybe 1 new item in a week.  Slow and controlled diet changes are the way to go.  Boring but safe.  Happy but slow.    
    • So I've been glutened....
      Jmg I am sorry to hear you are unwell. You have been so kind and helpful to me on the boards here. You deserve the time to rant too.   Everyone's suggestion of probiotic is helpful. I have taken them since the 1990's in spurts as needed but was told by my DC after this March glutening I should take it daily "for life". My local store ran out, (I buy the type that must be refrigerated so the manufacturer does not ship direct to customer.) I was ok first day without it but by day 3 I knew I had to locate some for the probiotic/ enzyme blend was necessary for me. I have still not healed well enough yet to be without. As others said it could be cc from sis or the food  industry. Within the food industry even with parameters in place errors can be made- hopefully not too often.  Often rare though especially if not designated facility.  It is hard to know some days what it was. I do hope you get better soon. Yes I do think it can affect the brain/mood. Happens to me a large amount can be immediately,  but a smaller amount by day 2 after glutening. I want to ban gluten everywhere in my environments, unrealistic I know,  but have only been able to do that at home.  Be kind and patient with yourself at this time as you would tell me. ((((((Hug)))))
    • So I've been glutened....
      Yeah I did all the bone broths and sauerkraut after my challenge. Although I wasn't very good at making sauerkraut... Its summer here now so I've eased up on the bone boiling, plus my local butcher is struggling to obtain them. As you say healing to the point where microscopic cross contamination doesn't get you would be a big win.  I was ok with coffee until last few days. I drank decaff black and would have several cups a day without issue. I'll be gutted if I can't handle it any more. I hadn't realised you could get gluten-free miso soup. Will have to look for that    
    • So I've been glutened....
      Coffee is a no-no for me!  I actually gave up coffee since my diagnosis back on 2/2016.  I was diagnosed by a biopsy in the stomach...no villi.   Coffee is a stimulant to the GI system and it really irritates your GI when you are having a flare up.  I was tested by stools and was informed I barely had good bacteria in my gut which is typically for people with celiac. I went on a high dose of probiotic (just started) twice a day, multivitamin, lots of fermented vegetables like sauerkraut, kimchi, miso soup and tons of bone broth.  I am going to a local farm today to pick up organic bones to make my broth.  I am so desperate to heal my gut, not to introduce gluten but to be able to tolerate an exposure without being knocked out by it....Eat very light, I stick to vegetable juice, resistance starch food such as banana, apples, potatoes boiled until my diarrhea subsides.  I am currently in a flare up stage; did something and I have been glutened I am on day 7 and my symptoms peak after a few days, around day 4-5 and it last a few days of Diarrhea, nausea, sensation of feeling full, back pain in the rib cage on left side and hip/lower back pain on left side.  Its horrible!  I feel weak right now due to the diarrhea and since I am not hungry it makes it worse.  Hope this gets better.
    • DNA Testing
      I got the print out and took it to my new dr because what my RA was saying didn't seem to add up.  When I pressed him for more info, he said I didn't have any of the markers. Turns out he read the test wrong!  Since then, my new doc also questioned all my previous bloodwork and asked why I hadn't been told that my counts were really low or tested for ferritin levels. My ferritin was at 10, so, yeah, 4 other Dr's missed anemia on my labs. It's been frustrating to say the least, but I am finally feeling a little bit hopeful with my new primary doc. She's just referred me to a specialist focusing on celiac. Considering my former gp told me "that whole celiac thing is just a fad", I'm feeling a bit more secure. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,909
    • Most Online
      1,763

    Newest Member
    Fourpeople
    Joined