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<channel><title><![CDATA[Celiac Disease & Gluten-free Diet Information Since 1995 at Celiac.com - Comments for article: Stories of Celiac Disease Symptoms—Both Undiagnosed or Misdiagnosed]]></title><link>http://www.celiac.com</link><description /><language>en-us</language><copyright><![CDATA[http://www.celiac.com]]></copyright><generator>N/A</generator><webMaster>scott@celiac.com</webMaster><lastBuildDate>Sat, 21 Nov 2009 07:16:02 PST</lastBuildDate><ttl>20</ttl><item><title><![CDATA[Comment #1]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3251</link><description><![CDATA[Thank you for this website. My daughter has had problems since she was born. She has been tested for so many years for so many different things and all came back normal. Finally at age 14 she went to see a doctor who seems to think with all of her symptoms she has celiac disease. It has taken 14 years for someone to figure this out. I think this disease needs more attention so others are diagnosed so much sooner.<br/><br/>
(Comment posted by Tanya at 8:02 pm, Tue 23rd Dec 2008)]]></description><author>no@spam.com (Tanya)</author><pubDate><![CDATA[Tue, 23 Dec 2008 20:02:21 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3251</guid></item><item><title><![CDATA[Comment #2]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3279</link><description><![CDATA[Am 41 yrs. old, white, English/Irish heritage, female. Diagnosed 10/06 after Cardiac Ablation for SVT. Had some stomach issues prior-VERY obese, constipation one day and diarrhea the next, acid reflux, headaches, body aches. But, the only thing I had prior to having my son in 1989 was obesity. After the c-section (general anesthesia), had all the other stuff enmasse. After the ablation, had trouble concentrating, eating/digesting, dizzy, stomach pains. Some of the meds prior had stomach side effects, so did not think much of it all. But, kept up with the docs. Finally, could not take the stomach issues anymore and kept after the doctors and 11 months after the surgery, was diagnosed Celiac. Was told the obesity was due to the absorption of a lot of toxic junk over the years through the intestinal erosion and constantly eating due to not feeling full EVER!! Since diagnosis, have had some improvements: Weight is down nearly 100 lbs. with about 60 to go, gait is somewhat better, aches somewhat better, diabetes much better controlled (no need for meds in I cannot tell you how long). But, still having gastro issues-food not wanting to digest properly causing gas, bloating, dizziness, headaches, nausea and heart palpitations. Wish I could say diagnosis/gluten-free diet was the cure-all, but for me, it helped immensely, but am still struggling after 2 years.<br/><br/>
(Comment posted by lori turner at 10:07 pm, Thu 1st Jan 2009)]]></description><author>no@spam.com (lori turner)</author><pubDate><![CDATA[Thu, 01 Jan 2009 22:07:58 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3279</guid></item><item><title><![CDATA[Comment #3]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3282</link><description><![CDATA[I have been checked repeatedly for celiac desease, and have always been told that I don't have this, however, I have similar symptoms going back since my childhood (I am almost 50).  I finally decided to do a gluten-free diet anyway, and guess what? I feel much, much better. It took this long to figure out whats going on. In the meantime time, I have gone from chronic stomach reflux to Barretts esophagus. Fortunately for me, with the diet change and the medication, it appears that the Barretts is reversing itself, according to my last endoscopy and the lab results.<br/><br/>
(Comment posted by Johnathan at 9:39 am, Fri 2nd Jan 2009)]]></description><author>no@spam.com (Johnathan)</author><pubDate><![CDATA[Fri, 02 Jan 2009 09:39:43 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3282</guid></item><item><title><![CDATA[Comment #4]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3283</link><description><![CDATA[Excellent article!  Be aware that if you are IgA deficient the blood tests are USELESS!  You may not know that you are IgA deficient, so the Dr. should check that level also.  I knew I didn't have any IgA and kept telling the gastroenterologist that, even asking him if the test would be accurate since I am IgA deficient.  His reply was 'Oh, yes, that doesn't make any difference.'  He repeated the test at least 4 times, all negative, then he could not understand why my intestinal biopsy revealed total atrophy of the distal two-third of my small intestine and severe inflammation of the rest. HA! What a dummy!  I went to a large teaching hospital at the recommendation of my immunologist and my internist, how both said the blood test was useless for me.  The gastroenterologist at the teaching hospital said 'Of course the blood test wouldn't be positive.  You could have your blood tested forever and it will never be positive. I don't even need to do a biopsy, I know you are celiac from your symptoms and your improvement with a Gluten Free diet.  Keep up the good work.  And by the way, here is the name of a store with lots and lots of gluten free food items, you may want to visit while you are in town.'  Prior to my diagnosis I had lost 35 pounds (weight was less than 100 pounds of skin and bone), had severe swelling of my lower extremities, and had no blood pressure so my internist took away my driving privileges.   To summarize - Make sure your IgA level is checked and is not low at the time of your blood testing for celiac!!!!  Thank you.<br/><br/>
(Comment posted by Lynne at 10:25 am, Fri 2nd Jan 2009)]]></description><author>no@spam.com (Lynne)</author><pubDate><![CDATA[Fri, 02 Jan 2009 10:25:48 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3283</guid></item><item><title><![CDATA[Comment #5]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3285</link><description><![CDATA[Great article! If you can get the media interested, it will save so many lives!<br/><br/>
(Comment posted by Jeff at 1:21 am, Sat 3rd Jan 2009)]]></description><author>no@spam.com (Jeff)</author><pubDate><![CDATA[Sat, 03 Jan 2009 01:21:15 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3285</guid></item><item><title><![CDATA[Comment #6]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3301</link><description><![CDATA[Great article.  I am 57 and was diagnosed 15 months ago.  I have a lot of physical damage due to Celiac that was first symptomatic when I was a child.  Thank God for a doctor who didn't think I had celiac but tested me anyway.  I had lost 30 lbs. and was constantly sick, picking up viruses at every turn.  My dad died of pancreatic cancer and, after two emergency room visits and unresolved treatment, I was convinced that I had it as well.  I began to put things in order in preparation was only a year or two more on this earth.  Then came my chance visit to a doctor who actually knew what he was doing!  I have gained back the weight but still suffer from symptoms occasionally.  The hardest part for me is reading every single label which means I have to put my glasses on at the store every time I pick up a package with more than one ingredient.<br/><br/>
(Comment posted by Annette at 2:13 pm, Mon 5th Jan 2009)]]></description><author>no@spam.com (Annette)</author><pubDate><![CDATA[Mon, 05 Jan 2009 14:13:28 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3301</guid></item><item><title><![CDATA[Comment #7]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3302</link><description><![CDATA[Wow! I really am not the only mom who had to worry for years before the answer came! My nine year old daughter had horrible tummy aches since she was born.  By her 5th birthday, her doctor began testing her for everything! Blood tests, X-rays, Ultrasounds, ECG--you name it! Always came back normal.  So it was chalked up to 'Kids don't always know how to interpret their body feelings'.  Our dentist even asked if she had been given lots of antibiotics as a baby, since her incoming adult front teeth were discolored and had weak enamel.  If only they had known that weak tooth enamel and discoloration of teeth is a Celiac symptom-- we could have gotten our answer three years earlier!  It took her losing lots of weight (she looked like a skeleton) to finally give her a positive blood test for Celiac with biopsy confirmation!  Now she's doing GREAT!<br/><br/>
(Comment posted by Diana at 7:18 pm, Tue 6th Jan 2009)]]></description><author>no@spam.com (Diana)</author><pubDate><![CDATA[Tue, 06 Jan 2009 19:18:21 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3302</guid></item><item><title><![CDATA[Comment #8]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3320</link><description><![CDATA[Great article. I am 57 years old and was diagnosed 3 years ago. My dad was diagnosed about 13 years ago after years of losing weight and dealing with intestinal problems.

My symptoms did not involve any digestion problems. Instead I had joint and muscle pain and fatigue. The doctors looked for lupus and other inflammatory diseases and finally said I had fibromyalgia and I would have to learn to live with it. Because my dad had celiac I asked to be tested. I was positive and after a month on the diet my aches and pains went away. 

It saddens me to think if my dad didn't have celiac then I would have never asked to be tested and I would have lived the rest of my life in unnecessary pain. I have tried to spread the word to doctors I know to check for celiac even if the symptoms are not digestive.<br/><br/>
(Comment posted by Paula at 7:25 am, Fri 9th Jan 2009)]]></description><author>no@spam.com (Paula)</author><pubDate><![CDATA[Fri, 09 Jan 2009 07:25:04 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3320</guid></item><item><title><![CDATA[Comment #9 (Reply to Comment #8)]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment4253</link><description><![CDATA[Great article.I'm being tested for celiac after 56 years of intestinal problems. I was also diagnosed with Fibromyalgia a year ago. I'm hoping for positive answers soon.<br/><br/>
(Comment posted by Darlene Anderson at 11:38 pm, Fri 14th Aug 2009)]]></description><author>no@spam.com (Darlene Anderson)</author><pubDate><![CDATA[Fri, 14 Aug 2009 23:38:14 PDT]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment4253</guid></item><item><title><![CDATA[Comment #10]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3394</link><description><![CDATA[Thanks so much for this post, I've just had my blood test for celiac disease.  I've suffered for 20 years so far and have been diagnosed with everything under the sun. I'm covered in ulcers, I've got arthritis, my bowel bleeds everyday, and really hurts to eat so I don't do that much but can't seem to lose weight. They've have given me so many meds over the years and to think its the food I eat. I've found out that all these symptoms are all related,  and my mum sisters and my son all have the same symptoms so I'm looking forward to at least maybe eating a meal that doesn't feel like I'm swallowing razor blades.  When I saw a site showing dermatitis herpetiformis I finally saw exactly what I had and it was a severe reaction to gluten which ulcerates my skin, and then it was easy to get the tests done.  Don't just go with the first hundred diagnosis...a lot of the time it's educated opinions until they can find it.<br/><br/>
(Comment posted by chell at 5:37 am, Wed 28th Jan 2009)]]></description><author>no@spam.com (chell)</author><pubDate><![CDATA[Wed, 28 Jan 2009 05:37:11 PST]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3394</guid></item><item><title><![CDATA[Comment #11]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3718</link><description><![CDATA[Until last week, I worked for an allergist who had a great gluten-free diet which I have lost.  I wish I had a copy of it.  It had about 10 items on it and he probably got it when he was at Bethesda.  So glad to see the great work you're doing!<br/><br/>
(Comment posted by ginger wilkinson at 9:19 am, Tue 5th May 2009)]]></description><author>no@spam.com (ginger wilkinson)</author><pubDate><![CDATA[Tue, 05 May 2009 09:19:41 PDT]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3718</guid></item><item><title><![CDATA[Comment #12]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3784</link><description><![CDATA[I was diagnosed last week with Coeliac disease.  Its interesting that everyone went through so much to get this diagnoses and I'm not alone!  I actually was listening to a medical program on the radio and they were describing celiac and mentioned that some people got dermatitis herpetiformis (the rash).  I've suffered from this rash on knees and elbows since my teens (I am 47) and could never figure it out.  Now in my 40's I have a lot of digestive problems including acid reflux etc. and was constantly being told I had irritable bowel syndrome and there was nothing I could do.  Anyway, after hearing this thing on the radio I went to my doctor and demanded a biopsy which came back positive.  All I can think is what if I hadn't listened to that program?  I don't understand why doctors continue to treat patients withintestinal problems for years and years and never suggest this test.  Thanks for the article and the website - I have a lot of learning to do regarding my diet but I'm ready.<br/><br/>
(Comment posted by Barbara at 10:26 am, Fri 15th May 2009)]]></description><author>no@spam.com (Barbara)</author><pubDate><![CDATA[Fri, 15 May 2009 10:26:16 PDT]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3784</guid></item><item><title><![CDATA[Comment #13]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3806</link><description><![CDATA[My story is long, albeit in a short time period, it was extreme. 5 months of hell. 5 months, hospital stays, and endless rounds of ' it is a mental disorder causing him pain. I heard doctors tell my son, 'it isn't as bad as your saying'. 

I had a 12 year old boy curled up in a ball in my bed, in pain and no where to go. The doctors had already let us down. No amount of pain would have had me take him back to the hospital to be dismissed again.
I don't know for sure, but it appears that he had labyrithitis first, which kicked off his celiac...
by accident we discovered this...
we took him off anything that was processed. He ate only fruit, vegetables and lean meat and he started getting better (I was unaware of celiac at the time)   When I would let him cheat (how bad can a healthy piece of whole wheat bread be) he would crash, dizziness, joint pain, stomach pain, extreme pain. Every breath he took was followed by a grunt of pain... He  sounded as if he was freezing, sort of chattering, extreme dizziness...

the long and short of this is... took him off gluten and he improved. Put him back on for testing and he crashed... 

he is standing behind me, recovering from having to be on gluten again... 

If I can get one parent to listen...<br/><br/>
(Comment posted by Kryss Quinn at 5:48 pm, Mon 18th May 2009)]]></description><author>no@spam.com (Kryss Quinn)</author><pubDate><![CDATA[Mon, 18 May 2009 17:48:49 PDT]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3806</guid></item><item><title><![CDATA[Comment #14]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3869</link><description><![CDATA[I am 50 years old, male and in fair health otherwise. I have had the same symptoms more on than off for more than 20 years. Acid reflux, cramps, bloated belly, I.B.S. and ect. The last 2 years have been continuous misery. A few months ago I went on a diet of soy milk, bananas and canned fruit, Because most foods just made me miserable. It was about a week or so before I started feeling much better, and a nice breakfast cereal changed that over night! So back to the bananas. At this time I hadn't made the connection, but another meal of wholewheat toast a week later made me see what was up. I am not 'officially' diagnosed, But 10 years of I.B.S. has magically disappeared in 6 weeks. So has acid reflux, diarrhea and ALL the cramping and shooting intestinal pain I had for years. I am researching how to best eat healthy, I don't care about what my doctor says, he's been confused for years. Your website is a great source of info. Thank you!<br/><br/>
(Comment posted by Robert at 4:33 pm, Thu 4th Jun 2009)]]></description><author>no@spam.com (Robert)</author><pubDate><![CDATA[Thu, 04 Jun 2009 16:33:26 PDT]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3869</guid></item><item><title><![CDATA[Comment #15]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3892</link><description><![CDATA[I'm still in a state of disbelief and, frankly, anger.  My husband has suffered with Rheumatoid Arthritis for 20 years (more if you count the years he was at doctors and told he had 'growing pains').  While watching 'The View' a few weeks ago, Elisabeth described the symptoms of Celiac Disease and we both turned to look at each other.  Within 48 hours of eliminating gluten from our diets he was feeling much improved (I have a bad nut allergy, so I can read a label and chuck things out) .

He's now been back on gluten for a week so he can have his blood tested, but we're not waiting for the endoscope - it's fairly clear that gluten is involved as he's showing the symptoms again with a vengeance, and they were keeping him awake last night.

I keep thinking about all of the pain medication and sleeping pills he's knocked back over the years trying to get a decent night's sleep.  What kind of shape are his intestines and liver in?

Why does it take 54 years and a TV talk show to make the diagnosis of a disease that isn't all that uncommon?  If this disease is also linked to RA, why haven't any of his rheumatologists discussed it? Honestly.  This explains why he's so skinny he has to run around in the shower to get wet, consistently has low folate levels, and abdominal pain and diarrhea.

Perhaps he should be seeing an immunologist in addition to a rheumatologist. Man!<br/><br/>
(Comment posted by Elizabeth Campbell Duke at 8:35 am, Tue 9th Jun 2009)]]></description><author>no@spam.com (Elizabeth Campbell Duke)</author><pubDate><![CDATA[Tue, 09 Jun 2009 08:35:43 PDT]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3892</guid></item><item><title><![CDATA[Comment #16]]></title><link>http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3951</link><description><![CDATA[I am 30 years old and have had stomach problems since after my six year old daughter was born. Three years ago I had my gall bladder removed. I was hoping that would have helped but continued to have horrible stomach problems. I ended up in the hospital and was referred to a GI specialist who believed I had IBS and has been treating me for it with medication and also had me go in for blood work for the gluten allergy. I have been trying to get pregnant since November of last year and have been unsuccessful. I am waiting for my blood test results to come back which should be by the end of the week. In the meantime I have already changed my diet to gluten free and started taking B vitamin supplements and I have NEVER felt better! I am also hoping that I will now be able to conceive a child soon!<br/><br/>
(Comment posted by Michele Guadagnino at 8:30 am, Tue 16th Jun 2009)]]></description><author>no@spam.com (Michele Guadagnino)</author><pubDate><![CDATA[Tue, 16 Jun 2009 08:30:21 PDT]]></pubDate><guid isPermaLink="true">http://www.celiac.com/articles/21715/1/Stories-of-Celiac-Disease-SymptomsBoth-Undiagnosed-or-Misdiagnosed/Page1.html#Comment3951</guid></item></channel></rss>