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.
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)
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?
Results – DQ ALPHA 1 RANGE (NOT APPLICABLE) MY RANGE 01,05
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
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.