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

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I'm A Newbie
0

8 posts in this topic

Hi- I'm new here. I've suspected for quite some time that I've had 'something' wrong. I finally added 2+2=4 and figured out gluten. I've been sensitive to dairy for years and avoid that, now its gluten too.

I've lost over 50 lbs since the start of summer. It seems so much is limited now because of dairy AND gluten. I'm waiting to see a gastro in a couple weeks and I know he is going to order more tests so I need to keep the gluten going but I can NOT spend hours a day in the bathroom (both ends). The vomiting is new since august/september.

I think I'm still in denial mode. Add in the fact that I won't eat red meat and my options are so limited .. or so it feels.

Anyone wanna have a 'welcome pity party' :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Have you told them how sick you have been. My husband got down to 110 lbs ( he was only 145 to start with) and really I don't think he would have made it another week. They could tell by speaking with him on the phone how week he had become and the doctor agreed to let him begin the diet. The damage to his intestine was still quite obvious. Maybe you could call the GI and speak with the nurse about it. Tell her the situation... Maybe she could speak with dr and get you in sooner or he could allow you to start the diet.

0

Share this post


Link to post
Share on other sites

My husband had same issues as you. Bathroom 50 times a day. Literally and throwing up. Quite a scary situation to live through. He could eat nothing. I was slowly watching him starve to death. He now weighs 185 lbs!!! :). Never been that heavy ever. Dr said his intestines were one of the worst he has ever seen. Completely smooth. Good luck!!

0

Share this post


Link to post
Share on other sites

I've told them. Part of the issue I've spent years running around with my PCP, who is convinced everything would be 'fixed' if I wasn't anemic. :angry: . I finally got a referral to the gastro when the PCP passed me off to a PA in the office. While I have the weight to lose, and I welcome weight loss, I can not spend hours a day in the bathroom.

The gastro office was wonderful. They totally understand, but due to other issues I refuse to see a female dr so the first available male appt was 12/3. People tend to write me off as nuts since I have some psych issues but those issues are being managed and honestly, I can not make up the puking, the bathroom issues, the sweats, the dizzy, the stomach pain.

0

Share this post


Link to post
Share on other sites

-snort-

I too was written off with its all in your head issues.

yet i was throwing up several times a week and had "D" daily.

0

Share this post


Link to post
Share on other sites




I think I'm still in denial mode. Add in the fact that I won't eat red meat and my options are so limited .. or so it feels.

Anyone wanna have a 'welcome pity party' :)

I hope you get good news regarding your GI visit. Good news meaning that you find an answser to your distress. I would certainly recommend a full biopsy with 8-10 samples, should you have an endoscopy exam.

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If Celiac is your issue, no pity party is needed. It's an adjustment to your diet and shopping and good health is right around the corner. :D

0

Share this post


Link to post
Share on other sites

Good luck and let us know how it goes! Hopefully you can get some quick relief. My son's doctor ( ped. Gastro) said most pcps wants to beleice everyone has celiac or no one at all....guess you got the second!

0

Share this post


Link to post
Share on other sites

My appointment can not come soon enough. I've been compiling a list of symptoms and once I get that man cornered in the office.... He may never get to leave.

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
      103,602
    • Total Posts
      918,318
  • Topics

  • Posts

    • to biopsy or not?
      Some other boxed mixes that I think are worth it are  http://www.krusteaz.com/products/gluten-free-mixes/gluten-free-double-chocolate-brownie-mix http://www.namastefoods.com/products/cgi-bin/products.cgi?Function=show&Category_Id=4&Id=21 We didn't care for any of the other Namaste products but the Spice Cake IS very good. Against the Grain Gourmet Frozen Pizza is really good! I hope you can find it at your local stores.   BTW, when I made breads of any kind from the ATK cookbook, when everything was totally cooled off I would wrap tightly in tin foil, slip that into a gallon ziplock & freeze. Slice things like laves of bread & rolls, buns, biscuits before you freeze them. Then I would just take out what I needed & heat in the convection oven or in the case of toast -- just toast it. Everything I froze turned out great so don't think you have to eat everything in 2 days. Of course with a family of 5 and how good this stuff is I imagine you won't need to freeze anything. 
    • Blood results - odd
      Hi I have been given a  working diagnosis of celiac disease TTG 103. I had the endoscopy yesterday and I am awaiting celiac serology ( tests go to a different lab so take longer). my GI Dr ordered more tests and some have come back odd, my ferrtain was 9 ( range 20-204) my folate 4.4 ( range 3.1 - 20.5) my B12 982 ( range 187-883). FBC  mean cell volume 76.9 ( range 80-100) mean cell haemaglobim 24 ( range 26.9 - 32) mchc 312 ( range 320- 359).   All other results appear to be in the normal range.  My question is the high B12 is odd, has any one else had anemia/ b12 deficiency symtoms whilst having high B12.   I went to the Dr as I am feeling awful, dizzy, palpitations and breathlessness and think it's to do with my iron, my gp was beyond useless and thinks it's all due to an infection as I had a temperature of 37.9. I still feel awful but not Like I have flu awful if that makes sense. I have gone gluten free as I have had the panel and the endoscopy now but feeling so much worse than I have in a long time. Gp has taken blood for CRP and FBC to rule out sepsis as I was feeling pretty broken as he though my iron levels would not cause these symptoms. I am going to try and get hold of my GI Dr or his sectary tomorrow and go back to the Gp and beg for iron.
    • Celiac.com: ImmusanT Inc Reports Nexvax2 Phase 1 Data In Patients With Celiac Disease
      A gluten-free diet is the only current management for this disease. The community prevalence of celiac disease is approximately 1% percent in the ... View the full article
    • Washing Dishes
      Gluten is a very sticky protein that cannot be removed easily. Non porous items can be washed safely and effectively, being very careful to throughly rinse, use a dedicated sponge/washcloth to wash. If washed by hand wash and rinse under hot running water not in a sink of water if you don't have a dedicated gluten free kitchen. My kitchen is totally gluten free and I still rinse under running water. I attempted to use the dishwasher for the first time yesterday and I feel like I've been glutened so I'm not sure if it's safe or not. There was no gluten containing dishes in it, but it's a rental house so God knows how the previous tenants used it and whether there may be any lingering gluten in it. I also have other issues that cause a lot of the same problems so I'm going to keep trying to use it for a few days and see if I continue to feel glutened or not. As far as counter tops, sinks etc, any non porous surfaces can be wiped clean, but it takes multiple wipe downs with multiple sponges. Thoroughly wipe down and rinse out the sink to rid it off any lose gluten particles. The same thing I did when first going gluten free. Only the kitchen I had then had laminated counter tops that were all scratched up. There is no getting gluten out of those kind of counter tops or cracks around the sink, etc. The ONLY way to possibly destroy/remove gluten from surfaces it's stuck in is to heat it above temperatures most things cannot tolerate and not all ovens can reach. You're looking at like 600°-700° F for a minimum of 30 min. So some stuff can be effectively cleaned in the self cleaning mode of an oven if it has one. Most cookware and utensils cannot tolerate those temperatures though and it's impossible to heat counters and other items to that temperature. Therefore being in a blended house is very risky if not done right. When I went gluten free everyone in my house went gluten free. Except the fish, you can't find gluten free fish food. My husband who shouldn't eat gluten anyway is gluten free and all our animals are on a grain free diet. Even my snake is gluten free since I breed my own feeder mice and feed them a gluten free organic diet. 
    • to biopsy or not?
      A small suggestion........for banana bread, try the King Arthur gluten free banana bread mix.  Yeah, I know......it's a mix but sometimes, time is short and a mix works well.  My husband and I were shocked at how good this is!  it rose up high and beautiful in the oven and has a really good banana flavor to it.  Really....give it a try.  It is so easy to make also! http://www.kingarthurflour.com/shop/items/gluten-free-banana-bread   The ATK cookbook is a keeper for every Celiac!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • 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
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,701
    • Most Online
      1,763

    Newest Member
    AbbieLee88
    Joined