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Possibly Celiac, Gi Disagrees
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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.

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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.

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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.

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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.

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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.

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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?

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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.

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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

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

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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

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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.

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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

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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.

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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:

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
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