• 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.

Possibly Celiac, Gi Disagrees
0

14 posts in this topic

Where to begin? I am 38, trying a gluten-free diet because ever since I was a kid, I had lots of problems and no answers to them. I had constant ear infections, learning disabilities,mood problems. As an adult, I developed asthma,(no allergies)GERD, IBS, Hashimoto's,depression/anxiety, dental problems. I have put on 100 pounds and very overweight,though I exercise regularly. My idiot pulmonary doc suggested weight loss surgery. I crave sweets and have floaty stools along with edema and swelling in my tissues. The GI tested me for Celiac last winter and it came back normal,so he said gluten was not a problem for me, so I continued my regular diet as usual. I just can't take being overweight and tired all the time. If I'm not Celiac, what the freak am I? Just frustrated with the dozens of doctors I've seen over the years who treat me like a quack job.

1

Share this post


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


What tests did your GI do? Did he do both a full panel with a total IGA as well as an endo? Even if he did them you could have still had a false negative. You have two choices. Go back to the GI or go to your regular doctor and ask for the blood tests to be repeated as things can change in a year. Or try the diet strictly for a few months to see if it helps. Do be aware though that if you choose to simply do the diet you would need a lengthy time back on gluten if you later decide you want more celiac related tests. Your symptoms do suggest you have found the right place to get answers to your questions as well as support.

2

Share this post


Link to post
Share on other sites

Wow, you really do sound like a walking poster child for celiac! I think perhaps your doctor didn't run the full panel...or the test was a false-negative. I'm from the school of thought that you should just go on the diet and say to heck with the doctors, but that's just me. Others on this site will definitely encourage you to have full testing. It's up to you...but I vote for feeling better ASAP!

Since you mention sweet cravings and being overweight, you might find a book helpful that I read about six months ago. It not only successfully encouraged me to give up all grains (and other things, I might add), but it explained nutrition and digestion so well, I'm finally losing weight and understanding why diets never worked. If you're interested, it's called, "Primal Body, Primal Mind." This is THE MOST HELPFUL book on physiology, chemistry, etc., that I've ever read...and, let me tell you, I've read quite a few in my time. You don't have to go on the diet changes it recommends, but it will explain how to eat what you already eat in such a way that your glucose level will stay constant (which is key for losing weight). BTW, I have Hashimoto's, too, as many of us celiacs do.

I hope you'll consider trying the gluten-free diet, as well as eliminating dairy and soy, until you know whether or not the diet will help you. I have a strong suspicion that your life is about to turn around.

2

Share this post


Link to post
Share on other sites

If you decide to go gluten-free, OK.

However, I wouldn't advise you to stop looking for answers - even while on a gluten-free trial.

2

Share this post


Link to post
Share on other sites

If going gluten free helps you, then you are on the right track. It is not going to help someone who does not have gluten issues, ie celiac. For many of us, we noticed near immediate improvement in a lot of issues and then some kinda come back hard with a small glutening or for no overt reason. For me, my body goes wonky a lot. Sometimes when i am 100% strict on what i am eating too. It can take a while for some issues to go away. We have people here who talk about certain issues taking months to a year to go away.

I was diagnosed by all the pretty tests as negative and non-celiac despite almost every symptom. Going gluten-free took care of 95% of them so much so that I have current primary care offering to officially diagnose me as celiac confirmed by gluten exclusion. He said the same thing as we see here. The tests are often wrong but it is the only tests they have. He said to trust a positive and doubt the negatives if the symptoms suggest celiac. The tests are negative for a LOT of people even when they have it. That is a big reason that many take so long to be diagnosed.

You have been through the ringer with doctors so there is not a lot left to continue to look for. For me, I had 23 years of doctor tests. They checked everything over and over. lots of money spent, little progress. Going gluten free and then dairy and soy free (many have soy and dairy issues at least short term) took care of virtually everything at a rapid rate. Try it for a week and see if it helps. Like I said earlier, if you are improving gluten-free, then bingo. Consider yourself a celiac and you can get on with your life and getting better.

3

Share this post


Link to post
Share on other sites
Ads by Google:


I would suggest reading Healthier Without Wheat by Stephen Wagnen. He discusses a lot about how you can test negative for Celiac Disease and still be gluten intolerant.

Eliminate the gluten and try the diet. See if it works. Give it a month. You don't need a prescription to do the diet. Or a special test. And if it doesn't work, you aren't out much money. But if it does work, you may have found the answer to a lot of your health problems. What do you have to lose?

1

Share this post


Link to post
Share on other sites

I would suggest reading Healthier Without Wheat by Stephen Wagnen. He discusses a lot about how you can test negative for Celiac Disease and still be gluten intolerant.

Eliminate the gluten and try the diet. See if it works. Give it a month. You don't need a prescription to do the diet. Or a special test. And if it doesn't work, you aren't out much money. But if it does work, you may have found the answer to a lot of your health problems. What do you have to lose?

I have not read that one, but now I want to. lol

Here are two that I read at day one and really liked:

Celiac Disease: The First Year by Shepard. It helps you by giving you advice by the day, then week, and then monthly. It helped me develop a starting plan. This is what many need as the beginning is overwhelming and it is easy to get glutened by all the junk it is hidden in.

Gluten-Free Diet by Hassellbeck. I thought she gave some decent advice. Some do not care for her book, but I think she is cute and..well..i am a guy, so just let me have this.

1

Share this post


Link to post
Share on other sites




Gluten-Free Diet by Hassellbeck. I thought she gave some decent advice. Some do not care for her book, but I think she is cute and..well..i am a guy, so just let me have this.

Chad...you have an excellent sense of humor! This line really cracked me up and I am female.... :P

1

Share this post


Link to post
Share on other sites

Good grief. Yes, you sound celiac. Also my asthma didn't really improve until I went off grains and dairy too.

2

Share this post


Link to post
Share on other sites

Hi Kristinad, I too am new to this forum and I feel like I am loosing the plot. I have had various problems over the years, one of them being an allergy to all types of grass, some trees and I recently had a food intollerance test that came back with a result saying I am intollerant to Rye. I was diagnosed with IBS about 20 years ago, spondylosis about 12 years ago, have osteoarthritis as well. I have so many symptoms I don

2

Share this post


Link to post
Share on other sites




My first AHA moment even though I did not know it at the time was when I went on Atkins. No breads and it just so happened that I naturally avoided a large amount of gluten added things. I felt phenomenatastical that entire year. Until this year I had always wondered what the key element was. Gall bladder died (confirmed?? by HIDA scan/no stones) on me after a year on the diet(family history) although and here is the kicker. The day those issues started was a time I ate a pizza. Yeah...you can see where i am going in hindsight. A year with literally no cheats at all and then one day I ate a whole pizza. As everyone here knows after being so good, you can react hard to a bad choice. Rapid heart rate, profuse vomiting, etc, etc think I was dead. lol. after about 6 months they took out GB but in the meantime i had lost that momentum and was back to eating carbs aka gluteny things almost immediately after that bad episode because some idiot nurse told me I had destroyed my heart with the diet. Later it was confirmed cardiac was perfect and chemistries were perfect. Just had a severe case of dehydration, but the emotional damage was done. I was off track and with no gallbladder, fats were and still are evil on my GI. I often wondered how things would have been different had I found this sight 6 years ago.

Here is the good thing about celiac. No surgery is required. No meds are required. And although I am not suggesting not going to the doctor (most get what I am saying here), no doctor or diagnosis is required. You have the diagnostic tools and treatment tools at your disposal. You can commit to eliminating all gluten for one week and see how you feel. I also agree with all the posts to avoid dairy and soy as well because I had a lot of issues with those things making me think gluten-free was not working.

I have had a lot of family members and friends contact me about their friends or suggest to their friends to just try the gluten-free for a week or two (relaying my story) to see how they react. It is not dangerous and can arm them for confronting a physician if it helps.

1

Share this post


Link to post
Share on other sites

My first AHA moment even though I did not know it at the time was when I went on Atkins. No breads and it just so happened that I naturally avoided a large amount of gluten added things. I felt phenomenatastical that entire year. Until this year I had always wondered what the key element was. Gall bladder died (confirmed?? by HIDA scan/no stones) on me after a year on the diet(family history) although and here is the kicker. The day those issues started was a time I ate a pizza. Yeah...you can see where i am going in hindsight. A year with literally no cheats at all and then one day I ate a whole pizza. As everyone here knows after being so good, you can react hard to a bad choice. Rapid heart rate, profuse vomiting, etc, etc think I was dead. lol. after about 6 months they took out GB but in the meantime i had lost that momentum and was back to eating carbs aka gluteny things almost immediately after that bad episode because some idiot nurse told me I had destroyed my heart with the diet. Later it was confirmed cardiac was perfect and chemistries were perfect. Just had a severe case of dehydration, but the emotional damage was done. I was off track and with no gallbladder, fats were and still are evil on my GI. I often wondered how things would have been different had I found this sight 6 years ago.

Here is the good thing about celiac. No surgery is required. No meds are required. And although I am not suggesting not going to the doctor (most get what I am saying here), no doctor or diagnosis is required. You have the diagnostic tools and treatment tools at your disposal. You can commit to eliminating all gluten for one week and see how you feel. I also agree with all the posts to avoid dairy and soy as well because I had a lot of issues with those things making me think gluten-free was not working.

I have had a lot of family members and friends contact me about their friends or suggest to their friends to just try the gluten-free for a week or two (relaying my story) to see how they react. It is not dangerous and can arm them for confronting a physician if it helps.

Thanks for all of the information. I have soya milk daily, just a drop every morning on cerial, I don

0

Share this post


Link to post
Share on other sites

Thanks for all the helpful information. I did start going gluten-free this month and I have noticed a difference in how I feel---not running to the bathroom and having the runs nearly every day is very nice! I cleaned out my pantry and gave my wheat items to my mom because I might as well go all the way and not half-way, you know? My mom thinks I have lost a little weight but since my thyroid meds were just increased, not sure if it's from that or going gluten-free. I am not as bloated, I have noticed, and I am going to a new GI after the holidays.

I went to my asthma doc this week--prob for the last time since he said I can see him "as needed." Each time I went to him he was always on me about my weight,thinking I eat too much, don't exercise enough and not doing anything to lose weight. When I told him I suspected I was gluten intolerant,the look on his face was priceless,like he felt like a bag of dog poop because he hadn't been able to figure it out himself.

1

Share this post


Link to post
Share on other sites

Gluten-Free Diet by Hassellbeck. I thought she gave some decent advice. Some do not care for her book, but I think she is cute and..well..i am a guy, so just let me have this.

okay, but just this one time, kiddo. :rolleyes:

:lol:

1

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
      107,349
    • Total Posts
      935,639
  • Member Statistics

    • Total Members
      65,027
    • Most Online
      3,093

    Newest Member
    lcook9@my.wgu.edu
    Joined
  • Popular Now

  • Topics

  • Posts

    • Celiac disease is not diagnosed by symptoms alone. Why?  There are over 300 of them and many, if not all, overlap with other autoimmune issues or other illnesses.  Learn more about proper testing: http://www.cureceliacdisease.org/screening/ I am formally diagnosed.  My hubby is not.  His mis-informed doctors told him 16 years  ago to give up gluten.  It worked, but now we do not really know if he has celiac disease or not.  He will be the first to say that I get WAY more support from family, friends and medical.   I am sorry at your doctor gave you the wrong advice.  Now, you must decide if testing is worth pursuing.  I wish you well.  
    • I am considering having my brother - who inherited Daddy's power woodworking tools - plane down my cutting boards and sand the edges enough so I can keep them. The spoons and soup stirring things though will have to be decorative. Breaks my heart. I've had good luck with Merle Norman cosmetics. They have a listing of things that are gluten-free that has helped me. My local store owner was able to get the list and knows what I can use and what I can't.
    • While you could very well be vitamin/mineral deficient, you could also have issues with your thyroid.  Autoimmune thyroid is common with .......autoimmune celiac disease.  Your doctor should order a full thyroid panel, including thyroid antibodies.   Your blood sugar should also be checked (autoimmune diabetes).  I am not saying you have these issues, but these AI issues are common with celiac disease.  In fact, you can develop or have more than one AI issue.   If I feel a very strong need to nap, I know my thyroid is off and my doctor should be notified.  A simple blood test usually verifies that an adjustment to my thyroid replacement is needed.   That said, you are in the healing stages of celiac disease.   Eat healthy and include plenty of fats to keep you satiated.  Try to avoid processed foods.  Make sure that gluten-free diet is varied and full of veggies.  Get plenty of rest.  Just listen to your body.  Soon you will feel much better.  
    • Hi and welcome Can you tell us a little about your diet? What are you eating on a typical day? You may find that some simple switches in food choices can deliver more energy and fewer spikes and crashes. This is something that receives too little attention, particularly from the medical community. It can come as a huge shock to the system and as the implications become apparent its easy to feel overwhelmed. This certainly happened to me and many others here so first do know that you're not alone. You are currently grieving believe it or not and you will be going through the stages of grief.  Second, although it may not feel it now, it WILL get better and you will adjust and adapt as you get used to the diet and start focusing on what you can still do rather than what you can't.  In the meantime, this is a good place to vent and share those feelings as they are perfectly natural and understandable and whilst not always helpful,  they are a part of you and a part of the healing process. Go easy on yourself, this is very early days. You are young, which is good news, it means you will heal sooner and you will adapt quicker and there's lots of good things on the way for you as your body gets a rest from the gluten that's been holding you back.  All the best! Matt
    • Hope it proves of use  The Umberto Volta interview is particularly interesting and the case study from England also...
  • Upcoming Events