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Possibly Celiac, Gi Disagrees


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13 replies to this topic

#1 Kristinade

 
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Posted 11 December 2011 - 02:04 PM

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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#2 ravenwoodglass

 
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Posted 11 December 2011 - 02:14 PM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 rosetapper23

 
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Posted 11 December 2011 - 02:35 PM

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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#4 Katrala

 
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Posted 11 December 2011 - 08:06 PM

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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Positive Celiac (Blood & Biopsy) - April 2011
Peanut Allergy

#5 Chad Sines

 
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Posted 11 December 2011 - 08:19 PM

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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#6 Celtic Queen

 
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Posted 12 December 2011 - 08:00 AM

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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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#7 Chad Sines

 
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Posted 12 December 2011 - 10:14 AM

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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#8 Gemini

 
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Posted 12 December 2011 - 11:36 AM

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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#9 Skylark

 
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Posted 12 December 2011 - 02:47 PM

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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#10 magso

 
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Posted 13 December 2011 - 09:35 AM

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 dont know where to begin. Today I have felt really ill, body and joint aches and pains, headaches, nausia, bloating, gas you name it I have it. I have polyps in my gall bladder andI thought that this was the cause of the abdominal cramps, constipation, diareah etc that I get but my consultant said he did not think it was the gall bladder causing the problems, thats when he sent me to have the food Intollerance test done. He thinks it could be food related. I asked my GP to test for Celiac, she sent me to have bloods done but they came back negative. Another GP I asked just said has anyone else in the family got it, i said no idea because no one has ever been tested for it so she just shrugged her shoulders and said no you dont have it then. I have to see my consultant again in January and he is my only hope of getting some answers - if he thinks it is food related then hopefully I will get an answer. I had stopped eating bread, cakes and biscuits but the past week I have had a cake, a couple of glasses of lager, a lot of chocolate and chicken cooked in breadcrumbs and to say I have felt ill is an understatement, especially today - I could just have stayed in bed all day I have felt so ill. I really do not know where to turn now, I just want to feel normal again, get up in the morning and not feel ill. Could it be Coeliac that I have?
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#11 Chad Sines

 
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Posted 14 December 2011 - 12:04 PM

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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#12 magso

 
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Posted 16 December 2011 - 05:30 AM

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 dont really have that much dairy so that should not be too much of a problem to cut out. I have tried not to have any foods with gluten in for a few days, Wednesday I was not too bad and yesterday I felt better but today I feel crap again with body aches and fatigue. I never know from one day to the next how I will feel when I get up, its really getting me down.
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#13 Kristinade

 
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Posted 16 December 2011 - 06:01 AM

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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#14 IrishHeart

 
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Posted 16 December 2011 - 08:09 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

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"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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