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bekkaz added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Help From Experts - Here Is My StoryI 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.
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bekkaz added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsSo Frustrated Test Results HelpI 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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bekkaz added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsSo Frustrated Just Want To Give Up On This...ughh Experts Advise Please!I won't get into my extremely long story but I have been having ongoing stomach issues that started back in Nov. Before that for as long as I can remember my stomach would swell up after I would eat, and I would like 4-5 months pregnant. I had two endoscopies, showing erosive gastritis, I had a colonoscopy showing mild inflammation. My celiac biopsy's and blood tests came back negative. I tested myself with enterolab, came up positive. I cut gluten, my stomach continued to really bother me. I was put on anxiety pills saying that it would also help with my stomach issues. I had other blood tests done, skin prick tests, etc. I came up positive on one blood prick test, with needles on my back to Soy, Corn, Chicken, Egg and Dairy. The next time I had it done on the arm with the little plastic type needles...came up positive to nothing. Begged the Dr. to do an IGG blood test, they sent that test through Mayo, Mayo sent it to Viacor. It came back 15x higher than normal to dairy. These Dr's that I am seeing aren't that serious about these tests. A naturopath Dr. I seen did some stool testing and found some bacteria's, that I read are part of the normal gut flora, but mine was just really high. She rx'd me 30 days of Cirpofloxin. I started feeling somewhat better and started "cheating" and messing with gluten again about 3 weeks ago. My stomach is slowly starting to bother me again, I am getting that same acid burning feeling and am SCARED TO DEATH to go through this stomach pain again. I lost 30 lbs in a month and a half. I am vitamin D deficient, I have fat malabsorbtion issues, and am not breaking down vegetable fibers either. I am so frustrated because I just want to know WHAT FOOD IS BOTHERING ME. Is it freaking gluten, is it dairy or what is it. I am beyond frustrated, I don't want to cut both of these out if not needed. I am confused on how to do an elimination diet right to figure this out. I am really desperate for help and advice. Honestly, gluten would be easier for me to cut than diary. While on gluten-free and still eating dairy I was still having some symptoms of the bloating with dairy. How can I tell what I am reacting to?!?
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bekkaz added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsMajor Stomach Acid Gastritis, Feel Like I Could Die!I am going to post this on a couple forums because I am not sure of the best place to post. I have been very very sick since Nov. I have always had stomach issue's, as far back as I can remember...12 years old. I would bloat way up, usually always was constipated. Always told me I had IBS. A couple years ago I went to a functional medicine Dr. after female issue's non stop burning. At the time I was being healthy, exercising, riding bike, and eating a TON of "healthy" WHEAT! Regular MD's said vulvadinia, which I 100% disagree with. However once they named me with that, every Dr jumped on that bandwagon. Long story short the functional medicine Dr. found I had a fungal overgrowth of the bad guys. Put me on a strict diet for a few weeks, supplements etc. My symptoms never really got that much better, or for long. I told them I was still having issues, they said we think you maybe have mold exposure in your home. Fast forward, I did...toxic mold that I tore up, breathed in and sent spores through my entire house (my ins. adjuster told me it wasn't toxic or black mold at all) Fast forward again to Nov. when I discovered my second bathroom also had mold under the floor, I ripped that all up. I believe the mold is out of my home now, however possibly low levels of spores lingering. About a week after that I went through some MAJOR stress at work. My job where I have been for 10 years was threatened, I was up all night with stress clinching my stomach all night. The next a.m. I was vomiting stomach acid. Since then = HELL! I have been on PPI's, H2 blockers, supplements, probiotics, Carafate to coat the stomach, another 2 week round of dyflucan for candida again (it showed up mild on organic acids urine test that Functional medicine Dr. ordered. I had my gallbladder removed in Jan thinking that would clear up my stomach issues. WRONG. I have been checked for H-Pylori, multiple times, which is negative. My husband is also having stomach acid issues, which is weird. I have been getting non stop tonsil stones in my throat, feel like I am choking or cannot swallow. I have had 2 endoscopy's, 1 colonoscopy, negative blood tests for celiac as well as negative biopsy. However, I had a POSITIVE, enterolab test for gluten sensitivity. 53 was my result. I literally have such bad stomach acid in the a.m., that I get cold sweats from the pain, I started a new job beginning of Feb. I was allowed to miss 5 days unpaid in the first 6 months, I have already missed all 5. I am scared to death I am going to get fired, the stress of the new job isn't helping my stomach either. Now they have also put me on anti-anxiety meds...so great now I am nuts! LOL Well yeah, this pain will do it to a person. I would consider myself pretty healthy before this. I never ever missed work like this in my life. I had pretty tough for pain, I had a 9lb baby, my gallbladder out....it's NOTHING compared to this stomach pain. I am also waking up every a.m. around 3-4 a.m. which was previously unlike me. I had a total breakdown, and balled my face off this am again, begging God to help take this pain away. I have literally wondered if this is what dying feels like, and sometimes have not wanted to go on anymore the pain is that bad My first endoscopy in Jan showed erosive gastritis, my one this past week showed mild gastritis. I don't get heartburn or any feeling of acid coming up in my throat It's all major stomach burning pain. I had been off gluten for about 3-4 days, then Friday ordered take out. Baked cod, got home and saw that they gave me fried instead. 40 min away. I ate it, probably very dumb. Can gluten intolerance cause this stomach acid pain this bad? If so, how long before I might get relief? I would do ANYTHING to make this STOP. Please help me!
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bekkaz added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsAnother Endoscopy And Colonoscopy On Monday! Anyone Have Second Biopsy +I have been violently sick with stomach pain, GERD major acid in stomach that is not getting under control since Nov. Have had 2 negative blood tests for Celiac, one I was off of gluten in the weeks prior to the test. My last endoscopy came back negative for celiac. I had enterolab test my stool, it came back positive for Gluten intolerance at a 53. I was also IGE skin prick tested and came back positive to soy, corn, chicken and a 3 reaction (4) highest to dairy. My enterolab came back negative for caesin. I am so sad to go in yet again for more testing but my stomach acid is so bad again that it's effecting my life so bad, I can't work or do the things I once enjoyed. I have also lost 30 lbs in the past couple months...not overweight to begin with. Has anyone had a negative biopsy for celiac the first time, and the second positive? My last endoscopy was in Jan. and it showed Gastric Erosion, my stomach was inflammed and the lining was eroding.
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bekkaz added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHow Long Before You Get Sick, After Eating A Reacting Food?Curious, when you react to something how long does it take for you to be sick. I am asking specifically for people who get diarrhea as a symptoms. I am very very sick this morning, my reactions don’t seem to be always happening right away. It seems to me the next day that I am very sick. I meet with GI Dr. again on Wed. I hope they can help me, figure out what is going on. I am scared that I could have Chron’s disease I think a colonoscopy is in my very near future. I have already had an endoscopy and my gallbladder removed in Jan. here we go again.
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