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

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:

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




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
      104,672
    • Total Posts
      921,690
  • Topics

  • Posts

    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
    • For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
    • My daughter had the HPV Vaccine last year. It was administered in three doses in April 2015, May 2015, and August 2015. Immediately after the third dose, she started having weird symptoms such has headaches, irritability, and a general feeling of being unwell (which she never had before). About three months later she started having gastro symptoms, most notably constant nausea. For several months we tried to figure out what was wrong and none of the doctors knew. After seeing many doctors and having a battery of tests, she was finally diagnosed with Celiac in August 2016. Her intestinal damage was a 3b Marsh score. No one else in our immediate or extended family has Celiac (myself and my other daughter were tested and are negative). No one else has symptoms or any indication that they could have Celiac. I feel like my daughter could have gone her whole life without being triggered and I'm feeling very guilty for making her get this controversial vaccine. I have done a lot of research and there seems to be conflicting studies regarding vaccines and autoimmune diseases. Some say there is no link, while others say there is a possible link, but it cannot be proven at this time. No one seems to know for sure what triggers Celiac...could it be vaccines? I'm wondering if anyone else feels that their Celiac Disease was triggered by a vaccine?  
    • Here is an article, albeit short, about Myocarditis and Celiac disease.  I have read before about a connection between the two and A-Fib is another one that can happen with undiagnosed Celiac. From one over-thinker to another......its the inflammation thing, along with maybe some genetic components to it.  I can't remember how long you have been gluten-free but it can take awhile for things to settle down, especially if your thyroid is wonky also.  I have Celiac and Hashi's so feel your pain, even though I have not had any cardiac involvement.  Some doctors really suck. I have a lifetime of bad with them so do not go that often, only when I have to and am leery about seeing any new ones. I am so done with that attitude of theirs. I think you need to find someone who has knowledge of Celiac and it's related conditions and who actually listens to the patient. That might be harder than finding a needle in a haystack but I wish you luck! 
      https://www.ncbi.nlm.nih.gov/pubmed/12045166
    • Older people often show clinically atypical symptoms of celiac disease, which can delay diagnosis. View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,669
    • Most Online
      3,093

    Newest Member
    Cjplmon
    Joined