Help From Experts - Here Is My Story

[bekkaz]

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

 

TMJ

 

Constipation

 

Anxiety

 

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?

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

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.

Candida

 

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. 

[beth01]

The symptoms sound a lot like celiac, but with the gene testing being negative it is highly unlikely.  I don't know if that is all the gene testing that is available, I don't know much about them but I am sure that someone else does on here and hopefully they comment. Maybe it's NCGI.

 

With what seems to be a bunch of food intolerances I would maybe start with an elimination diet.  I would read up on them. What kind of diet do you have now? Are you properly supplementing for the deficiencies? 

 

I am also in Wisconsin and am seeing a Mayo doctor.  I would ask for the "celiac panel" that they ran and get the results.  A lot of patients don't have adequate testing done. I know they only ran the tTg testing for me and nothing else but it was positive so I didn't worry about other testing. 

 

Good luck and I hope you find some answers soon, it's no fun feeling like crap all the time.

[nvsmom]

With negative genes, it is very unlikely that you have celiac disease. I think 97% of celiacs have the DQ2 and/or DQ8 genes. It is possible to get celiac disease without those genes, but it doesn't happen much.

 

The stool test is not a celiac test. Most mainstream doctors will question the validity of those stool tests.  I have the opinion that it seems to have a much higher than expected positive rate so I am guessing that many are false positives. If it is correct, it indicates that you have a gluten sensitivity. Because your genes are negative, it would probably be caused by non-celiac gluten sensitivity (NCGS) which is much more common than celiac disease and has almost all of the same symptoms.  The only way to diagnose NCGS (NCGI) is with a positive response to the gluten-free diet.

 

If you do decide to try the celiac tests, this is the panel:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA

AGA IgA and AGA IgG (older tests)

 

Good luck.

[SMRI]

If it were me, I would buy a private insurance plan this fall that covers Mayo and go there.  I would focus on the IgG subclass 2.  Did they run all of the subclass tests?  All of the bacterial stuff going on could possible trace back to that depending on how low that was.

 

The ringing in your ears and dizziness is very likely Meniers' disease. It's an inner ear disease that does cause hearing loss.  I would go to a good ENT..or wait to go to Mayo when you have different insurance.

[1desperateladysaved]

I thought that lymphocytes at work in the intestine is Phase 1 celiac or at least could be.  You may want to look this up or ask for a second opinion from another doctor.  If you are going to see another GI that would be the perfect opportunity.  Did you print the entire script here for the endoscopy report?

 

Thyroid full panel has more tests.  I will write here all I can. TSH (This is the one usually tested by itself)  T3, T4, Reverse T3, Reverse T4 Thyroid antibodies.  My TSH was normal, but T3 showed borderline low.

 

You might look into fructose intolerance.  You did the dairy, I believe.  Also, Fodmaps diet.  Check on the list to see if the foods high in fodmaps make you bloat.  Perhaps everyone gets a little bloated eating watermelon, but my tummy does the 4 months pregnant thing.

 

Please don't give up.  Your symptoms may be hard to determine a cause for and complicated, but something causes them.

 

Dee

[bekkaz]

I don't think they published my endoscopy reports on my chart at all. Currently the ear ringing is not happening. What is happening is diarrhea, vit d deficiency, and horrible upper back pain. I just called the clinic and asked for my celiac blood results. I am listing them here. My question is do the below results look like the full celiac panel? Same with the DQ testing, I can't tell if this Dr tested for both DQ genes.

Glidian Peptide 9 normal range between 0-19

Immunoglobulin A -182 normal (68-378)

Transglutaminase IGA - 5 normal (0-19)

Is this considered a full celiac panel?

[beth01]

Nicole listed the tests above, I would ask for those that are missing.  Are you still eating gluten or where you eating gluten when the testing was done?  You need to be eating gluten for up to 12 weeks before blood testing and endoscopy.  Also find out exactly what gene testing was done.

[bekkaz]

I see Nicoles testing above, but I don't know if those are the short names for my testing? Does it look like based on my blood test they I had a full celiac panel, or parts of one? I can't remember if I was on gluten for 12 weeks at the time. I was very sick. The testing was done on 12/12. I think I had been off gluten around this time. I told them that. They said you were on gluten in 2011 when they tested the Transglutaminase IGA only and it was 6 (normal)

[beth01]

You would need a Trasgluminase IgG (tTg testing),  the endomysial (EMA) IgA, and I am not sure just which DGP (Gliadin) they ran, either the IgA or the IgG but you would need the one they didn't run, you didn't have any AGA testing done.  Without eating gluten though the tests are worthless as would an EGD with biopsy.

[bekkaz]

This makes me furious! I asked for the full celiac panel to be ran. How did they run only half of it. What do I have to say to these doctors to get the correct test!!!! Do you think the gene testing was accurate. I can't tell if they ran for one gene or both?

[nvsmom]

Beth was correct, they only ran about half of the tests... it's the norm for them to skip some.   My doctor would only run one, and then the EMA IgA (anti-endomysial immunoglobulin A) if the first was positive.

 

I don't think they published my endoscopy reports on my chart at all. Currently the ear ringing is not happening. What is happening is diarrhea, vit d deficiency, and horrible upper back pain. I just called the clinic and asked for my celiac blood results. I am listing them here. My question is do the below results look like the full celiac panel? Same with the DQ testing, I can't tell if this Dr tested for both DQ genes.

Glidian Peptide 9 normal range between 0-19   This is the DGP IgA or DGP IgG - it doesn't say which
Immunoglobulin A -182 normal (68-378)   This is the total serum IgA, which is a control test to make sure you have enough IgA for testing, and you do
Transglutaminase IGA - 5 normal (0-19)   This is the tTG IgA
Is this considered a full celiac panel?

 

These tests are the most specific to celiac disease (meaning if you get a positive it is probably caused by celiac disease and not something else) but they are not highly sensitive.  The tTG IgA misses between 5 and 25% of all celiacs, and the others are similar. The old AGA tests (anti-gliadin antibodies) is te least sensitive so it is not often used anymore.

 

This report, pages 10-12 mainly, have some more info on testing: Open Original Shared Link

 

So far your tests look negative, but if you want to be sure you'll need to do more tests and/or maybe have the biopsy done.  

 

Are you still eating gluten?  You need to be eating gluten in the 2-3 months prior to testing for it to be accurate.

[jebby]

Hi Bekkaz,

I am in the 1-2% of celiacs who are DQ2/DQ8 negative and so is my mom. We are DQ7/DQ7. We are Sicilian.

My TTG IgA and Endomysial IgA were very, very high before I was diagnosed though.

There was a poster at the International Celiac Disease Synposium in Sept 2013 showing that 9% of Brazilian celiacs are DQ2/DQ8 negative, just some food for thought.

Were you gluten free when your celiac antibody panels and endoscopies were done? 

J

[beth01]

Bekka - you pretty much have to go in and give them a list of exactly what tests need to be run. I am not sure where you are in Wisconsin, but the doctors in my area are all pretty much clueless about Celiac or so it seems to me.  I have been thinking about making an appointment at the Chicago Celiac Center to see what they think is going on with me besides celiac.

[jebby]

I am in Green Bay and it's a sad state of affairs up here, Celiac-Wise.

I agree that you should head to U Chicago or Mayo, if you possiby can.

[beth01]

Thanks Jebby.  I am around the Lacrosse area and am seen at the Mayo here but not by someone at the Rochester clinic.  I am going to do some research about their GI docs and see if I can't go to Rochester if they have someone that specializes in celiac.  Otherwise I am going to go to Chicago.

[SMRI]

I also go to Mayo.  The best thing about Mayo is if they run all the tests and the numbers come back like you are seeing, they will do more testing to figure out what in the heck is wrong with you vs shrugging their shoulders and sending you on your way.  I don't know how the U of Chicago works with multi-disciplinary work like that but I would do what I can to get into Mayo.  My celiacs was discovered after another doctor, outside of the GI department, ordered the testing just to rule it out.  I really only had D as a 'symptom' but it runs in my family.  My daughter's tests came back inconclusive---she has way more symptoms than I do but she is low IgA/IgG so that will throw off her results.  They still want to see her and have ordered a battery of tests to see if something else is causing her issues or if she really is Celiacs but her other health issues are causing false negatives.

 

Wisconsin is a goofy, goofy state for health insurance and medical care.....can you move across the river into MN .

[bekkaz]

Thank you all!  I am around the Madison area, and all 3 GI Dr's I have seen are clueless.  There is a new one that supposedly specializes in Celiac, I was going to see him...but then I cancelled the appointment.  I was thinking at this point the RD could help me more, so I am seeing them on 8/14.  The biggest thing that the Mayo Dr. and my Primary Dr (who I consider smart) were saying is the elvated lympocytes found on the endoscopy point to Celiac.  The GI Dr's note said it is not uncommon to see this, so who only knows.  I have been reading the Eat Right 4 Your Type Books, and find them interesting.  It says more than 48% of Type A's (which I am) are Celiac.  Most A's shouldn't eat Wheat at all.  Same with O type,  O Blood types should avoid wheat as well.

[beth01]

It's not uncommon to see increased inter-epithelial lymphocytes on an endoscopic biopsy, just ask all us celiacs who have had them listed on their pathology reports.  But they're also seen in other processes too.

[SMRI]

It's not uncommon to see increased inter-epithelial lymphocytes on an endoscopic biopsy, just ask all us celiacs who have had them listed on their pathology reports.  But they're also seen in other processes too.

 

I just looked at my results, I have interepithelial lymphocytes too....whatever those are . It also says :  "These changes are not 

 entirely specific, but suggest celiac sprue. Other possibilities include bacterial overgrowth, hypersensitivity reaction to 

 non-gluten proteins, tropical sprue, or protein calorie malnutrition."  "crypt ratio 1:1-2"  (no idea what that means).

 

Now, I also tested positive on the IgA and IgG tests as well as the genetic tests.....and have family history so it's pretty much a done deal for me.

[bekkaz]

Thanks SMRI they never told me any other reasons of what it could be. What's tropical sprue? I definitely could have had malnutrition at this time considering I had lost 30 lbs in 2 months.

[SMRI]

I had to look it up--basically it's damage from bacteria you can get if you live in the jungle .  My endo didn't know either .  I'm pretty sure I don't have that .