Tests, Tests, And More Tests

[kujhawkrulz]

I am a registered nurse and have spent most of my adult life taking care of others but for the passed 5 months I have been very sick. Actually for most of my life I have been the child that caught every weird childhood disease and this even carried over into my adult life.  

When I was a child I had pityriasis, the 5th disease and seborrhea psoriasis.  After obtaining my LPN I had the mumps and after I became an RN in 2010 I had scarletina.  Any infection going around you can be guaranteed I will get it.  I spent the entire month of October with either vomiting or coughing, I have since quit smoking which my PCP recommended but I still catch everything.  I even had some brain lesions that I was sent to the Mayo clinic to be r/o for multiple sclerosis.  The main problem that I have is severe bloating and diarrhea in which I have been hospitalized 2 times and told it was IBS and that I needed to take an anti-depressant and not get worked up over life.

I've had 3 steroid injections in my back, 2 in each knee and 2 in my right shoulder and every MRI that has been done on me shows fluid in my joints that is not supposed to be there indicating according to my specialist that I have an autoimmune disorder which he tested me for Rheumatoid Arthritis and Lupus which both came back negative.

I now have severe bloating, watery stools that stinch up the entire house and most of the time I can't finish eating before I am on the toilet.  I've lost over 20 pounds since the end of April, lack motivation, energy and any desire to participate in life's happenings.  I really feel sick.  The doctor did blood tests for Celiac's disease that he told me today are negative.  Nothing works for the rash except cold baths, tea tree oil, and Eucerin. My potassium level is low, my other electrolytes are on the low side of normal.  For the rash I have tried everything imaginable including 2 rounds of Permetherin because my PCP suspected I had scabies which never made since to me since I have a 1 year old that I am in contact with constantly that has no signs of such a thing.

The PCP won't do anything for the rash, like Dapsone unless the blood tests were positive and since they aren't they sent me home crying and in desperation.  I don't sleep most nights because I stay up itching or on the toilet, or both usually.  As I was leaving the PCP office today his PA told me to just go on a gluten free diet, that the only way I will know is to try it.

 

I have another appointment at 9:30 tomorrow morning and I'm not sure how I'm going to handle the PCP, I just wish he could've seen me on my knees crying my eyes out when I got home feeling absolutely, positively, clueless of what to do to get better.  I understand that I can have the endoscopy but insurance will not pay for it without positive blood tests and the cost is too high for me at this time to absorb financially. 

 

What to do, this is a very hard pill to swallow.  Thanks for the forums, I've learned a lot in the few days that I've been reading.  Squirmyitch you are a wealth of information and I really appreciate the time you have spent on the DH forum.  I have a lot to think about today, but I feel like I've been put in the position to just go completely gluten free and see where it leads my health. 

 

About how long did it take for you all to quit having the bowel symptoms once you did go gluten free?

 

[cyclinglady]

Are you sure you got the complete panel? Just the screening TTG IGA and the IGA deficiency test are often given instead of the complete panel to save on costs. In my case only the one DGP IGA test was positive. My TTG was negative! If my GI celiac savvy doctor had not ordered the entire panel, I would have been out of luck! Anemia was my primary symptom and I had no GI issues at the time of my diagnosis (biopsy revealed a Marsh Stage IIIB).

[cyclinglady]

If you choose to go gluten-free, it can take months to a few years to feel better. Took me about two years, but I was also dealing with Hashimotos thyroiditis, diabetes, and menopause. My anemia resolved in about six months. Then I just dealt with the masked symptoms of celiac disease which I had always blamed on age!

Read the newbie 101 section under "Coping". If you have DH, you have to be super careful. One exposure can cause DH to linger for months to a year!

[kujhawkrulz]

If you choose to go gluten-free, it can take months to a few years to feel better. Took me about two years, but I was also dealing with Hashimotos thyroiditis, diabetes, and menopause. My anemia resolved in about six months. Then I just dealt with the masked symptoms of celiac disease which I had always blamed on age!

Read the newbie 101 section under "Coping". If you have DH, you have to be super careful. One exposure can cause DH to linger for months to a year!

IgA, 161

 

Endomysial Antibody IgA, Negative

 

tTG IgA, <2

 

I turn 44 in 8 days and I'm supposed to be leaving to travel by the 24th of this month in another state, I just wanted some answers before I left for work  I definitely do not want to be trying to work and itching all over.  Benadryl doesn't cut it neither did any of the too numerous to mention, creams that I've tried since March and TAC cream or Nystatin cream the doctor prescribed that actually made the rash much worse.  I stopped taking NSAIDs thanks to the forum and I'm going to cut iodine too.  I know that running to the toilet sucks but the rash is driving me batsh** insane

 

My sister has Hashimoto's Thyroiditis and on my mother's side of the family there are multiple family members with autoimmune disorders, including RA, lupus, and Chron's.  I am not aware of anyone that has Celiac's but I know that my grandmother died of lymphoma as well as her sisters, everyone of them.  My mother has bowel problems as well but told me that she wasn't giving up bread to fix them at her age, which is her deal but she stinks up the entire house too if you get my drift.  She is always running to the bathroom to make it on time, but its her body and her life, my dad complains that she sleeps too much and has no energy,

 

I did find out that my thyroid medications need to be adjusted, I told the doctor that's probably d/t the fact that most of the time I see the Metformin and other meds in the bottom of the toilet along with anything I eat.  Actually I'm on 88 mcg of synthroid and my TSH has never been this far out of whack, plus my K+ is slightly low along with the other electrolytes because I can't keep anything in my gut long enough....I live in a very rural area and the doctor I talked with didn't even know what DH was until I enlightened him and he left long enough to bring it up on his tablet because I caught him when I left the room to use the toilet for the sample he requested.

 

Anyways, thank you for the quick response, I'm going to continue to read here and I guess I'll find out more tomorrow.

[bartfull]

I think what you should do is find a good dermatologist who knows about celiac and DH, keep eating gluten, and have a biopsy of clear skin next to an active lesion. If you've been reading the DH section you already know that often, folks with DH will come up negative on the blood tests.

[ravenwoodglass]

 Everyone heals at a different rate and some symptoms may resolve long before other ones do. It took a long time for us to become so sick and it takes some time for the antibody reaction to resolve.

 

Your symptoms are very similiar to mine. As for that MRI look up UBOs or Unidentified Bright Objects on a site like PubMed or something similiar. They are lesions that form when celiac attacks the brain. My neuro was clueless and after a spinal didn't show any debris he just shrugged his shoulders and told me I wanted to be sick. I could barely walk unaided at the time and was having a severe issues with speech and memory.  It wasn't until a few years after I was finally diagnosed that I did some research on celiac impact on the brain that I found out what those lesions meant.  I lost the links to the papers I found years ago but I may have posted a couple here. Try searching the board for the word 'neurological' and you might find more info on those from myself and others.

 

You also did not have anywhere near a complete celiac panel. If your GI won't do further testing tell him you want a second opinion.

 

It can take a bit for all celiac related issues to resolve but some should be relieved fairly quickly. I can only tell my experience but for me the D stopped within a week. It did come back with a vengence when I slipped up. It would stop again within a day or two but others symptoms would continue for a while. 

I dropped iodized salt from my diet as well as gluten and that helped my skin recover. While I stopped getting new lesions within a couple weeks it did take a while for the ones I had to heal.

 

The symptoms that caused them to suspect MS will take longer in a lot of cases. I continued to recover for over 6 years. I did see a great improvement and could walk unaided at 6 months but had other issues that took longer.  Do have you B12 levels checked if they haven't been already. Low B12 is not uncommon in people with celiac.  I found physical therapy to be helpful in my mobility issues. You may want to ask for a referral to a PT to help with mobility.

 

If your doctors will not do any more testing and you can't find one who will do more through testing then just get on the diet. Strictly. I am not a medical professional but you sure to sound like you are posting in the right forum.

[kujhawkrulz]

Ravenwoodglass, 

 

Your reply is very insightful, I had just talked with my mother yesterday as she was the one who drove me to Rochester to see the neurologist asking her if she thought maybe the lesions had anything to do with gluten. I remember explicitly telling them and answering every questionnaire about my bowel related problems and having been hospitalized 2 times with them and multiple trips to the ER when I would bloat up to the point I could barely walk and they never once talked with me about the lesions being related to anything but possible MS.

 

I had two MRI's of my brain in Kansas and 1 at the Mayo Clinic in which all of them show them in the same locations, my symptoms included slurred speech, disorientation, severe  fatigue, and tremors.  My exact words to the neurologist in KS and MN is that I constantly felt like I was in a brain fog and couldn't think.  To be honest with you, after going through this for over a month I actually felt like I was dying and thought I possibly had a tumor or something because of the tremors and made my living will putting my brother in charge if I wasn't able to make decisions.  

 

The bowel troubles were still going on as I explicitly remember eating at a really good restaurant down the street from our motel and NOT making it back in time and being absolutely mortified because I smelled horrible  I spent most of my time in public restaurants flushing so no one can hear me or smell me because its just absolutely disgusting as I am sure a lot on this forum know fully well.

 

We recently went to the KC Royals and I actually took a long an adult brief just in case I decided to eat.  It is inevitable, if I eat I will be spending time on the toilet, lots of time, and I'm really tired of it!!  Tomorrow, I will see the doctor and I'm going to insist on the endoscopy with biopsy, he did mention that if my Celiac test came back negative, lol, he wanted to do a colonoscopy.  I guess he can do both or I can find another doctor.  

 

I will read about the relation to the lesions on the brain and gluten and take that with me tomorrow.  I really appreciate all that you have posted.  Thanks for the encouragement for getting the tests done and I look forward to doing a lot of research on here and getting to know those of you whom post regularly a lot better.

[squirmingitch]

This is the full celiac blood panel:

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
GLIADIN IgG
GLIADIN IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

You've been reading so you know that 60% of the time those of us with dh test negative on the blood panel. That leaves us with an endoscopy --- SIX samples should be taken

 

And the best way to get a dx when dh is involved is to get a dh biopsy. Read in the dh forum for details on that - how is is done PROPERLY. A dx of dh IS a dx of celiac & no further testing is needed to confirm the dx.

 

DO NOT STOP EATING GLUTEN UNTIL ALL TESTING IS DONE.

 

You sure do sound like you belong here. I am one of those dh'ers that did not have all the big, bad GI symptoms. I had them, I just didn't know they were so abnormal. I had "D" once every 6 weeks to 2 months accompanied with the awful screaming gut pain. I had bad, bad, stinky gas, bloat like you wouldn't believe -- I literally could not move at the waist I was so bloated & thought I would quite simply just explode into 5 millions pieces because the body can only expand just so far before it pops. Belching like a sailor. Brain fog, migraines, oftentimes unable to form a sentence, couldn't remember squat -- names of things like "fork" or "window" or "car" -- I thought I had Alzheimer's or a brain tumor -- pain ohhhhhh the pain -- joints, muscles, bone, muscle twitches, red rimmed eyes, muscle cramps, fatigue & rapid heartbeat pounding, dizzy, not being able to walk a straight line, anger, depression & more. And then the rash hit over most of my body. 

I now know, hindsight being 20/20, that I was celiac since at least 12 or 13. I went gluten-free @ 54. Healing...... everyone is different ...... It took me close to 3 years for all the symptoms to resolve excepting the rash which I only have 1 or 2 transient itchies that don't itch constantly & some days I have none at all. I did recently discover that I am one of the 8% of celiacs who actually reacts to even certified gluten-free oats. I had always thought my 1st reaction upon getting glutened would be the rash going gonzo. But after 3yrs. gluten-free I began using certified gluten-free oat flour in a bread recipe. The first symptom that returned was the dizzy feeling & heart pounding rapidly then my bp began to rise, borderline migraines. I was going crazy trying to figure out how I was getting glutened. I wondered if it was all in my mind. I went over every single thing in this house a thousand times trying to figure out what it could be. So I glutened myself for 3 months not knowing it was in actuality the oat flour. The last things to present was the "D" with cramps and the rash. Back on track now & fine. 

[kujhawkrulz]

Trying to make light of all of this is not too much fun, but I swear to you I will make sure I eat glazed doughnuts for a week before the test.  I just really want some closure, this is horrible.  I finally slept for 5 hours last night so I'm ready for this appointment this morning.  I'm printing the tests that need to be run and want to tell all of you that have commented on this post how much I really appreciate you taking the time to lend me a hand.  

 

When I was in nursing school I had a professor tell me that she thought I had "wheat belly" and then again while taking a Master Gardeners class, a gluten sensitive classmate told me that she had the same symptoms that I did.  I would stink up the entire basement if I decided to eat in class, so usually I refrained from doing so.  I have never been one that could really drink any beer without bowel related problems.

 

When living in California, I was told that was sensitive to lactose so I do not drink milk.  The ongoing joke around here is give me milk if I need to go and its guaranteed results in 30 minutes or less.  I believe the lack of calcium is causing the hump at the base of my neck and I do remember my grandmother saying that she could drink goat's milk without bowel problems but not cow's milk.  I lived with her when I was a senior in high school and drank goat's milk as well without near the symptoms.

 

I'm a ticking time bomb when it comes to my mouth at times, and I'm not talking about lesions here or anything, I'm talking about the short fuse I have and I let people have it verbally without even thinking.  Afterwards, I find myself apologizing for speaking my mind, not that I wasn't correct in my statement, rather the poor delivery, sometimes just down right mean.  As of late, I find myself really ticked off at any doctor that has ever touched me and didn't listen to what I was telling them, but you know I really can't be that insensitive, because like I said I'm an RN and all that we learned about celiac disease in school was to refrain from wheat.

 

The lesions that itch.  I looked at your photos and mine are not that severe but, they are symmetrical in presentation and itch like crazy.  The itch comes first and then papules that are fluid filled and I end up itching the top of them off.  The only reason I started using tea tree oil is d/t the fact that I figured I better use something to keep from getting impetigo.  I've had one tested before on my coccyx because I thought I had herpes and the doctor told me that it came back negative and asked me if I thought it could be poison ivy or something that I had gotten in to as we spent a lot of time outside.  Up until recently I had been outside, but I find if I am in the heat the rash leaves me digging and in complete misery.

 

My son's tell me how proud they are that I can pass gas better than any man they know...which I just try to laugh off but actually it is embarrassing.  My guts rumble non-stop, and since April if I try to pass gas I am putting myself at horrible risk of crapping my pants in which I have multiple times  I just want it to stop and to have a life free from these symptoms.  I'm going to the doctor soon, I just hope and pray that he listens to me without thinking I'm some kind of lunatic!!!

 

Thank you so much, you really can't understand how much this means to me.

[squirmingitch]

{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

 

Let us know how the doc goes.

 

We're here for ranting, venting, screaming, stomping & crying. We're also here for the victories.

[ravenwoodglass]

I second the (((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))

Many of us know how hard it is when we are so very sick and doctors keep telling us that we are just a 'nut case'.  Many a time I left a doctors office only to sit and cry in my car. I hope you have good luck at your appointment today and are able to finish testing and get on the diet and start healing.

[kujhawkrulz]

Sorry for taking so long, I purposely ate at taco bell today so that I could make sure I was really glutened good and I've been sick since, laying around with a horrible gut ache.  I have to do a 24 hour stool collection for more testing.  This doctor I'm going to now, which I was turned over to by the PA I was using, is really nice and actually he told me today that he feels like I do have celiac disease and DH and would like to help end my suffering.  

 

Actually, I was scheduled for the EGD and Colonoscopy after a consult on the 24th and he called and said that it was too long to wait and found a GI doctor coming to another area hospital this week and personally called me to ask if I would rather go there instead of waiting until the 24th to be seen by a local doctor.  I agreed and his office is supposed to call me back with the appointment time as soon as they get it.

 

I've lost 4 pounds since I was at the doctor on Friday and blood pressure was 160/100 upon arriving which he was not happy about.  I've never had a real issue with BP.  The doctor did say that he was not going to worry about my TSH until we got the bowel problems straightened out because he wanted to focus on one thing at a time.  Plus, he said that he wanted to re-run the test along with others and a complete panel as I showed him.  He is very concerned he told me, so I guess that for now I'm going to run with what he's doing and try to find something out.

 

So, as it goes the punch biopsy is done and I have 2 little stitches that have to come out next Monday.  Yes he did it NEXT to an active lesion, under my arm that was blistered and itching like mad.  I am a happy camper about how the appointment turned out today.  He was armed with his laptop and took a very thorough history.  He told me that he was an Air Force doctor before starting at the clinic, I've been to the clinic just not to him and it worked out well for me as of today

 

I'm not sure how long the punch biopsy is going to take to get back but soon I hope.  I was really pleased to hear him say "keep eating gluten until we get all this testing done."

 

Thanks for the hugs and well wishes it means a lot to me.

[icelandgirl]

Hi and ((((hugs))))!

You've been through a lot and it can be so tough getting this all diagnosed correctly. It sounds like you had a really good appointment today and a Dr that seems to understand. That's great! Please let us know when you get your results! Welcome to the board!

[squirmingitch]

Wow, wow, wow!! GOOD deal! It sounds like you hit pay dirt with this doc. You even got a biopsy there???!!!! Holy cow. Will wonders never cease! So this guy sounds like he actually knows what he's doing when it comes to celiac testing. I'm flabbergasted and very, very happy. You're getting the 1, 2, 3 punch all in a row without having to fight for every single inch of ground. So blood panel down, punch biopsy down & only the endoscopy to go. 

 

I'm sorry you're sick & we know that will continue until the endo but you're on your way!

 

It should not be a shocker on a celiac site that a person actually walks in & gets all the proper tests ordered or performed to either diagnose or rule it out but it is a huge shocker!

 

Let us know when you hear anything please. 

[kujhawkrulz]

I'm bloating something fierce.  I haven't eaten at Taco Bell in months.  Yes, I feel fortunate and very relieved tonight, all except the abdominal pain, but this too shall pass.  Thanks for everything, and yes the biopsy came as a total surprise.  He came in the room where I was and said "What do you think about doing a biopsy of a lesion."  I actually started crying a little bit and told him that I didn't want to live like this the rest of my life and hoped he could put the pieces together and figure out why I'm always so sick.  He said that he would do the best that he could.  I'm happy.

[squirmingitch]

I lived on GasX for years. Take it on a regular basis b/c i found that if the bloat got ahead of the GasX then the GasX just kind of sat on top of the gas bubble.

[kujhawkrulz]

I lived on GasX for years. Take it on a regular basis b/c i found that if the bloat got ahead of the GasX then the GasX just kind of sat on top of the gas bubble.

The clinic just called.  The GI specialist is coming in to a town 25 miles from me.  My appt is tomorrow morning and 9:30 am, I have to be there by 8:45 am to do paperwork.  I have never had anything move this fast in my life.  I'm very astonished, but I think the doctor must want me seen quickly.  Thanks for all the hugs and prayers, they are working

[squirmingitch]

Well knock me over with a feather!!!!!!!!!!!!!! Woooooooooooo Hooooooooooooooooo! It's almost over. I am thrilled for you. I don't know if the hugs & prayers are working or if you're just about the luckiest girl in the world right now. Maybe you ought to buy a lottery ticket today.  

[cyclinglady]

Great news!

[ravenwoodglass]

Hope all goes well with your appointment this morning.

[kujhawkrulz]

I just returned home.  Not sure what to think.  GI specialist stated "it can't be Celiac's because your TTG is not elevated."  Okay so here's what is being done.  Colonoscopy on 8/20/15 at 4:30 pm followed up by a small bowel capsule if he does not find anything on the colonoscopy.  I was going to have to wait until September until they found out I've had diarrhea for 5 months continuous and that I'm losing weight, which I've lost 2 more pounds.  Anyways, blah!!!! 

I guess I should be happy they are doing something and not just telling me I'm crazy and to get out of their office.

[frieze]

well he is full of it, and should be doing the endo at the same time.  they like to separate them to make more money.

[squirmingitch]

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!! Just when it was all going so well. Some dumbass comes along & throws a pipe into the spokes of the wheel. Okay, so when you get the blood work results back that was just done the other day -- the full panel -- then you can go from there. Hey, you might not have to go any farther at all. If the dh biopsy comes back positive then you have a dx plain & simple. When do you next see the ex Air Force doc? He's the one who actually has a brain & knowledge. If your bloods come back positive then he may decide to dx you based on that. Ask him. Especially since the GI specialist refuses to do an endo unless you have a positive TTG. Sigh.

Actually, can you call & get in to see the Air Force doc quick? It might behoove you to see him & tell him about the specialist -- maybe he can refer you to a different one. I hate that now you're stuck eating gluten b/c you might get an endo at some unknown point in future. 

[kujhawkrulz]

I got back to see the Air Force doctor on the 17th the get the sutures out  I'll hope and pray something from the biopsy is conclusive.  Anyways, feeling horrible tonight, not a lot of energy to do much.  Thanks for your prayers and hugs!!

[squirmingitch]

Hang in there hon. We'll wait till the 17th then.