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Not Diagnosed Yet....lots Of Issues, Worries, Questions

124chicksinger

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124chicksinger Apprentice
124chicksinger
Posted

I am waiting on blood work results, and have scoping scheduled for next Wednesday, March 3.  As many of you will sympathize, it has taken a few years of suffering, and connecting the dots, to get to this point.  I do not know why my GP, who also has a gastro practice, didn't draw this conclusion sooner.  Instead, it was menopause.  The rashes on my hands/wrists, feet/ankles, was an allergic reaction to....???? tho they looked like petechia, and itched like hell (I was treating myself with aloe gel and anti-itch creams and hand lotions).  I can't say it was DH, but perhaps it was the start of it or a version of it?   The bloating?  The constipation?  The urgent runs?  The gurd.  The vertigo. The chronic sinus infections.  The pain?  The tingling extremities.  The lethargy.  The exhaustion.

 

It started with what felt like a gallbladder attack. While he eventually scheduled a catscan, it showed an ovarian cyst, so looking for what really was/is wrong stopped there.  He said I had no gall bladder stones, so that was ruled out.  The cyst turned out to be nothing, but of course I had to have an ultrasound and see the gyno; this took months and was a waste of time. NEVER did I think that was my problem; my issues were digestive related.  Again, it was chaulked it up to being slightly overweight and menopause.  He said "YOU'RE FINE" - so I didn't go back to see him for 10 months.  As long as the mail order sent refills of synthoid/metformin I didn't want to go see him and have him make me feel like I was imagining illness.

 

I have hypothyroidism, type 2 diabetes, fatty liver, rosacea, geographic/fissured tongue, hair loss.  I have extremely hard to fight dandruff.  Dry patches on the corner of my mouth, on the sides of my nose, on 1 ear.  I had frozen shoulder on the right about 8 years ago, and now on the left.  These are either diagnosed, or can be physically seen.  The petechia could be seen. The bloating can be seen. My awful, horrible tongue, can be seen.  These aren't subjective, these are objective, and not in my imagination.

 

To discover that gluten - intolerance, sensitivity, or celiac disease - can be the underlying cause of my "diseases" and "issues" is upsetting, but could also be a relief. I'm upset that I didn't have a clue sooner, and my doctor didn't put 2 and 2 together sooner, especially since he has a gastro practice. You'd think he'd have been all over this.

 

Only now do I know about celiac and gluten intolerance/sensitivity.  I do not know which I have, but I definitely have something.   All of the "ills" I've been dealing with for 25 years....can it really be coincidental that so much of it points to gluten?

 

In December I returned.  I said I felt the same, if not worse.  I got my scripts refilled and promised to schedule a routine colonoscopy, and he said while doing that, he would do an upper scope to look around and see what was going on in my stomach.  I still didn't make the connection, but between then and now, I did.  I started looking at upper scopes and led me to celiac.

 

This week I had a follow up appt., and also to get the instructions/script for the colonoscopy.  I asked about testing blood testing for celiac, and he said...."I mentioned this in December"  I said...did you say the word celiac??? Did you say bloodwork?  He said...well, I said we'd do the upper scoping to take a look. So why did I have to ask for the bloodwork?  WHy didn't he order the bloodwork in December?  Isn't that the first step?  Do they like to go directly to the biopsy?  I just wish I had known about the bloodwork back in December and would already have that in hand.  

 

Whatever the bloodwork reveals, and whether or not the biopsy shows celiac, I intend to go on a gluten elimination diet.

 

I am writing here because there is no one else at the moment I can "talk" to.  I am in no man's land.  I do not have an official diagnosis, and may not get one, and I feel very alone.  I am not afraid to go gluten free, and I'm not afraid of a celiac diagnosis.  I almost welcome it.  Either way, I am ready.

 

How many of you share my history?  I am curious of that.  I read that geographic/fissured tongue is a tell-tale sign to consider celiac; how could that be missed by every doctor/dentist I've seen for the past 25 years?  

 

Has any of your doctors wanted to look first at your small intestines and not do the blood work?

 

Sorry if I'm rambling.  I hope you understand. ... and, thanks.

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GottaSki Mentor
GottaSki
Posted

No apologies ever needed here.

 

Unfortunately, you are not alone.  I had many symptoms dismissed or misdiagnosed for over 25 years.  Once I was finally diagnosed I can track symptoms all the way back to early childhood.  There are way too many folks with similar stories.  We understand your frustration.

 

In the five years since I was diagnosed we have seen strides in the right direction, but many doctors - even within gastroenterolgy - remain woefully lacking of knowledge/experience with the symptoms of and proper testing for Celiac Disease.

 

Welcome to the forum -- you have a good plan now -- make sure you ingest gluten daily until the 5th and then remove it completely.  Let us know if you have any questions with your test results.

 

Oh...make sure the doctor performing the endoscopy takes multiple biopsies of the small intestine.  6-8 is ideal, yet single samples happen far to frequently.  Request written copies of both the procedural and pathology reports.

 

Hang in there :)

124chicksinger Apprentice
124chicksinger
Posted
  • Author

No apologies ever needed here.

 

Unfortunately, you are not alone.  I had many symptoms dismissed or misdiagnosed for over 25 years.  Once I was finally diagnosed I can track symptoms all the way back to early childhood.  There are way too many folks with similar stories.  We understand your frustration.

 

In the five years since I was diagnosed we have seen strides in the right direction, but many doctors - even within gastroenterolgy - remain woefully lacking of knowledge/experience with the symptoms of and proper testing for Celiac Disease.

 

Welcome to the forum -- you have a good plan now -- make sure you ingest gluten daily until the 5th and then remove it completely.  Let us know if you have any questions with your test results.

 

Oh...make sure the doctor performing the endoscopy takes multiple biopsies of the small intestine.  6-8 is ideal, yet single samples happen far to frequently.  Request written copies of both the procedural and pathology reports.

 

Hang in there :)

Thank you. I'm ready to change my life, and I know I have to continue with the gluten until the 5th.  I am just about forcing myself to have some daily.   Reading your history I noticed the histamine.  My husband suggested an allergist; I went last week. He said I was dermographic and would like to put me on antihistamines.  He said dermographics are often celiac.  I looked it up too; there it was.  We discussed food allergies and gluten intolerance aren't necessarily hand in hand, nor mutually exclusive.  I don't know what I wanted from him...but it was a good discussion!  He said if my GP/Gastro didn't order the bloodwork for celiac, he would.  We discussed the wide spectrum of gluten, and he was very understanding and knowledgeable and spent a good hour with me.  The sad thing was...I presented my history and my "theory" and had to ask him...do you think I'm a hypochondriact and I'm making this up - because my GP has been largely blowing this off.  He said no--it sounds like you're close to putting the puzzle together.  He was stunned by the appearance of my tongue.  Actually, it was like a precursor to the discussion I intended to have with the GP this week, only the GP was receptive - I didn't have to "tap dance".  Anyhow, I declined the antihistamines feeling that I cannot add it to my plate right now. I don't want anything new in my system to skew anything.  I didn't start eyedrops from the eye doc either; not until I get the biopsy done.

 

I read it takes about 10+ years before the celiac "light bulb" goes on and either the patient or the doctor suggests tests.  I read 1 in 100 or 1 in 133 people actually have celiac, and I'm assuming those are the ones who got a diagnosis, so likely it is more?  You'd think the testing would become routine at those figures.

 

Interestingly (?), my skin reacted to the scratch testing on oats, barley and sadly rice.  (Also cashews and oysters...weird.)  Not only have I eaten instant oatmeal weekly - cuz its good for diabetes - I also love barley in soups and eat a lot of rice.  None of these affect me in a "shock" way, but if they reacted on my skin they must be doing something in my body. Since barley and oats go with the wheat and rye, maybe there is a little connection...I don't know.  I do have a reaction to raw celery making my mouth tingle/numb, and raw basil sends me to the toilet in 15 minutes.  The 5 things the allergist told me, I'd have never known.

 

So here it is 3am.  I should be asleep and my mind is racing.  

 

Thank you again for your reply.  

GottaSki Mentor
GottaSki
Posted

No worries...make some tea or take a bath...I completely understand the excitement that comes from that "lightbulb" moment.  There isn't much to do until your endoscopy.  Try to take these next few days to prepare for the changes to your kitchen...this thread is very helpful:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

As for numbers...I can tell you 1 in 133 is people that likely have Celiac...some estimates are 1 in 100, but just a small fraction of the 1% of population estimated are currently diagnosed.  Of course there is another estimated 6% of population that are Non-Celiac Gluten Intolerant.

 

Get some rest :)

 

Edited to add a better source for undx'd celiac:

 

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