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Member Since 15 Feb 2010
Offline Last Active Jul 26 2014 11:26 AM

Topics I've Started

Help From Experts - Here Is My Story

24 July 2014 - 11:11 AM

I hope to get some help on this board.  So for the past year to year and a half I have been having problems.  I have went through more needle pokes than I care to even think about.  I have kind of, have, not really and not at all been diagnosed with Celiac.  Since I have been about 12 years old I can remember my stomach severely bloating after I would eat, during my late teenage years I was diagnosed with having IBS.  I went to the ER for stomach pains that doubled me over and I couldn’t move.  Again for as long as I can remember since about 12 my stomach will blow up after I eat, I am 36 now and it happens so bad that I literally look 4-5 months pregnant at times.  People around me are shocked by this.  About a year ago I started getting really bad ear ringing, and would get so dizzy that I felt I was going to pass out, and actually did pass out a couple of times.  They said they thought it was vertigo, this happened to me about 4 times…where I actually passed out.  I am going to list my medical timeline and test performed in order below to help make this easier to hopefully read.


Stomach Bloating


Constant Bacterial Vaginosis alternating between BV and Yeast, extremely painful Dr thought it could be Vulvadenia (I knew it wasn’t) after countless Gyno’s thinking I was crazy, I was exhausted and sought out a Functional Medicine Dr. – They did a stool test via metametrix labs stating I had a +2 fungal overgrowth.  They put me on a very restrictive diet for 6 weeks, I made it 3 weeks.  My symtoms weren’t improving with the supplements to kill off the fungus/yeast in my intestines so they told me to check my environment for mold.


Toxic Mold Exposure – We found we had a slow leak that was leaking water under our bathroom floor, we cleaned up the mold (not knowing it was toxic, or even mold at all per the lovely ins. adjuster) I later found out it was indeed toxic mold.


Vertigo – Dizzy episodes, ear ringing, passing out


BIG weight loss – I lost 30lbs going from 155lbs to 125 lbs in 2 months, have since gained it all back.


Extreme and I mean EXTREME stomach burning – my stomach literally felt like a hole was burning through it – During this time they put me on several acid reducers and ppi’s, they didn’t work. This has gone away not much burning any more.


Gallbladder removal – No stones, but in a desperate attempt to fix me, they seen my Bile wasn’t secreting normally so they decided to take my gallbladder out (in retrospect, probably didn’t need it removed)


Tonsil Stones  - starting getting a TON of these nasty little things, they have no clue why








Migraine/Headaches – Have been ok lately


Diarrhea (this is a daily thing now to the point where I am running to the bathroom, and sometimes TMI can’t make it on time)


Depression (was so depressed and suicidal that I was hospitalized for a week, which the meds made worse) Now on a low dose mood stabilizer for this.


Insomnia – Like clockwork I started waking up every morning at 3:45 a.m.


Severe Chest Pain (this has gone away now) – Gave me some nebulizer treatments for this


Severe Back Pain (this gets so bad I want to cry, I think I might have the start of Osteoporosis)


Tests Ran

Celiac Blood Panel – They have ran this twice, came up negative both times. (I don’t have the results with me)


11/22/13 - Celiac Gene Testing – I begged the quack GI Dr. to run this test, I am not sure if he ran it correctly and ran for both Genes?


                   DQ BETA 1      RANGE (NOT APPLICABLE) MY RANGE 03,06

                   SEROLOGIC EQUIVALENT 7,6

                   CELIAC GENE PAIRS PRESENT – NO  

                   INTERPRETATION - The absence of HLA celiac permissive genes would make the
presence of celiac disease unlikely.
Method: Low to Medium or High Resolution Molecular Test.


IGG Subclass Panel Ran – I was found deficient in IGG Subclass 2

IGE Blood Test Ran for allergy’s (negative on the big hitters, such as wheat, soy, dairy)

IGG Blood Testing (positive for Cow’s Milk & Egg)

Allergy Testing - Skin Poke (needles to the back allergy testing) which came up positive for Chicken, Corn, Dairy

Allergy testing to the arm with plastic scratches (came up positive for dust only, not the foods as above)

Gluten Intolerance Stool Testing– Positive for Gluten Intolerance with Enterolab

White Blood Cells  – Several of my blood tests came back with elevated white blood cells, they could never figure out why

Stool Testing – for Giardia, H-Pylori

Fecal Lactoferrin Stool Testing – Positive (indicating of inflammation, they never knew why, this points to IBS or IBD, blood test for that were negative)

Thyroid and Reverse Thyroid -  (normal)

Vitamin D – Blood Test Was deficient Both Times

H-Pylori (negative had been tested about 4 x for this one, blood, stool and biopsy)

Fecal Fat Stool Testing – (this was done through the clinic and was 3 days collections, it was found that I was not breaking down fats properly or vegetable fibers) this led to pancreas testing

Pancreas Testing (normal)

IBD Blood Testing (normal)

Barium Swallow – With X-Rays, had me doubled over in pain, found to be normal

Endoscopys (2) - One showed Erosive Gastritis, Second one the Dr. said was normal and then 2 weeks later sent a letter stating this

The duodenum biopsies (first part of the small intestine) showed a mild increase in white blood cells called lymphocytes.  While this is likely an incidental finding (it is commonly seen), it is remotely possibly that it is related to some mild chronic inflammation in the intestinal tract. (I was so sick I was trying to get into GI at Mayo Clinic, and I only could go for a consultation because my INS. refused to pay for Mayo.  I called the Mayo Dr. when I got this letter from the quack GI Dr. I had seen here in WI.  The Mayo GI Dr. told me that elevated lymphocytes are a HUGE indicator of celiac disease.  My family Dr. said the same thing.

Colonoscopy – Nothing found

Gallbladder-  Removed

Eye Test – To make sure I didn’t have something wrong, I was having big problems with things that moved fast on TV and it was making the vertigo worse

Blood Tests – At least 60 different blood tests have been ran during the last year on me.



I am scheduled to see a RD in a couple of weeks.  I had made an appointment with a new GI Dr. and cancelled it as I feel I would just be wasting my time at this point. 

So Frustrated Test Results Help

27 November 2013 - 06:51 AM

I am so frustrated and confused.  I don’t know if I have a gluten intolerance or possibly dairy or something else?!?  I have had tons of symptoms I won’t go into all of them but as far back as 12 I can remember my stomach swelling way up after I would eat.  This past year I got extremely sick, I lost like 30 lbs in a month’s time.  I was 5’7 and 155 to begin with, my lowest weight was 119.  I ended up having my gallbladder removed, they thought it was that.  I didn’t get better.  I had two upper endoscopys and a colonoscopy.  They found erosive gastritis in my first endoscopy.  My blood test for celiac, negative.  I had two done.  Both negative.  On my second endoscopy they found mildly elevated intraepithelial lymphocytes  with normal vili architecture.  I will also say that during the past two years anytime I had my blood work drawn, I would show elevated WBC, they couldn’t figure out why.  It was always elevated with Lymphocyctes and Neutrophils.  The GI Dr. that did my second endoscopy came out and told my Mom that everything looked fine, then we got a letter about two weeks later talking about the elevated intraepithelial lymphocytes.  I had been so sick that I decided to go to Mayo clinic, only problem was my INS. Didn’t cover mayo, so I paid like 900.00 out of pocket just to consult and meet with one of their GI Drs.  That GI Dr. told me he would work with my GI here.  I called the Mayo Dr. and let him know about the lab results stating elevated intraepithelial lymphocytes.  He told me that is a huge marker for celiac disease and to stop eating gluten.  My regular family Dr. said I am not expert but from everything I know these test results are a big marker for celiac, stop eating gluten.  However, the GI Dr. will not diagnose me with celiac.  In my other testing we found that I am very vitamin D deficient and I am also not absorbing fats, they have no idea why I am having fat malabsorbtion issues.  While I was so sick I was begging them to take some IGG testing for food intolerance stuff.  Some of the prick tests came back showing Soy, Dairy, Chicken, Egg.  That was on my back I had it done 6 months after on my arm, and didn’t react to anything the same.  Except dust!  I also had a blood draw done for an IGE (I think IGE panel) that test came back showing 15x higher than normal for cow’s milk, and also for egg.  I was off gluten for a while, my stomach was flat.  I have been back on gluten and get the big D. usually every day.  I also get very dizzy spells at times, and have actually passed out. I have had a positive stool test for gluten done by Enterolab.  I know many people on here do not vaildaet that testing.  I have pain in my upper spine so bad that I wonder if I am in the beginning stages of Osteoporosis.  I have had problems with my teeth this year, and needed a root canal.  I just got really frustrated trying to know for sure if I was celiac or not…so I decided to ask/beg for the Gene testing.  The GI Dr. who I am not at all impressed with (who told me everything was good when it wasn’t before) he ordered the gene testing this week.  They just told me over the phone that the Dr. read the results and I DO NOT have the gene’s possible for celiac.  I am so frustrated.  I thought for sure I would have these genes and I could put this to rest in my mind once and for all.  So now, I am back to the drawing board.  Is this a gluten problem a dairy problem or a candida problem.  Does anyone know if a dairy intolerance can create elevated intraepithelial lymphocytes in upper GI?

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