Could this be Celiac? Help!

[meg-c]

Hi everyone, my first post here. I've been having some medical issues for the past few months, beginning probably in May or so. I've had weight loss (roughly 50 lbs - I was heavy to begin with, so I am not dangerously thin) coupled with decreased appetite and occasional tummy issues. The stomach issues are intermittent, maybe one a week... I can seem to find no pattern with them. It's mostly diarrhea - sometimes what looks to be yellow/mucous-y. I also have floating, foul smelling stool (sorry, TMI). I've also had pretty substantial diffuse hair loss (again, thankfully I had thick hair so it isn't super noticeable to anyone other than myself). But, every time I shower, comb my hair, or even so much as run my hands down my hair, I lose a handful. As superficial as it may sound, this is my biggest problem. I also have fatigue - as everyone my age is heading out to party or go to bars, I'm literally heading to bed. I can get 10 hours of sleep at night, then crash around 4PM. I try not to nap because it throws off my sleeping pattern even further. Occasionally, I also I have dizziness when standing.

 

I went in to see my PCP, she ran a bunch of tests, including a full thyroid panel, everything came back normal. She referred me to an endocrinologist who ran more tests. Again, my thyroid levels and antibodies all came back normal. It's not diabetes either. The only test that came back abnormal was my DHEA-sulfate level. The endocrinologist said that because my testosterone level was normal, he was not concerned. I am having regular periods and no other signs on PCOS. He referred me back to my PCP, who I will see in two weeks.

I also know that a lot of these are classic anxiety/mental health problems. While I'm not discounting them, everything feels too physical. I've always been a nervous person, high-strung even. I've never been clinically diagnosed as having anxiety. Most of these symptoms presented themselves during my summer vacation where I had very little anxiety/stress (most originates from school). Even then, I was sleep upwards of 10 hours a night. I don't disagree with this possibly being a diagnosis, I'm just not entirely sure.

I should also mention that autoimmune diseases run in my family - my father has T1 DM and my mom has Graves' disease (both have been ruled out) 

Sorry this has been so longwinded. Does anyone have any further suggestions? Does this sound like it could be Celiac? Like I mention, I see my PCP again in a few weeks and would like to have some suggestions for her as well. When I spoke to the nurse on the phone, she mentioned that my doctor would like to run GI tests, so I'm hoping a celiac panel will be one of them. 

 

Thanks in advance

[GFinDC]

Hi Meg,

It could be celiac disease.  Often doctors run only one of the celiac disease antibody tests when there are a number of other ones that could tell a different story.  Some people fail the commonly done initial test but have a positive on the one of the other antibodies types when a complete celiac panel is done  You only have to have one positive antibody to have celiac disease.

Doctors may think your hair can fall out because of depression, or that you can have diarrhea because of depression/anxiety.  But they used to also say that ulcers were caused by stress.  We know now that they are usually caused by a bacteria.  I suggest you don't accept any diagnosis of depression/anxiety causing your symptoms.  That is a cop-out by the doctor IMHO.

The generally accepted celiac disease diagnostic procedure it to do blood antibody testing first and then follow-up with an endoscopy.  The endoscopy should take 4 to 6 biopsy samples for microscopic examination.  Celiac disease damage is not always visible to the naked eye.

Please don't stop eating gluten (wheat, rye, barley) until all testing is complete, including the endoscopy.  Stopping gluten early can negatively affect the celiac disease testing.

And welcome to the forum!

[meg-c]

20 minutes ago, GFinDC said:

Hi Meg,

It could be celiac disease.  Often doctors run only one of the celiac disease antibody tests when there are a number of other ones that could tell a different story.  Some people fail the commonly done initial test but have a positive on the one of the other antibodies types when a complete celiac panel is done  You only have to have one positive antibody to have celiac disease.

Doctors may think your hair can fall out because of depression, or that you can have diarrhea because of depression/anxiety.  But they used to also say that ulcers were caused by stress.  We know now that they are usually caused by a bacteria.  I suggest you don't accept any diagnosis of depression/anxiety causing your symptoms.  That is a cop-out by the doctor IMHO.

The generally accepted celiac disease diagnostic procedure it to do blood antibody testing first and then follow-up with an endoscopy.  The endoscopy should take 4 to 6 biopsy samples for microscopic examination.  Celiac disease damage is not always visible to the naked eye.

Please don't stop eating gluten (wheat, rye, barley) until all testing is complete, including the endoscopy.  Stopping gluten early can negatively affect the celiac disease testing.

And welcome to the forum!

Thank you for the quick response! I will try to get my PCP to fun the full panel. 

I agree with it being a cop-out. It was what my endocrinologist suggested to me. I also do not agree with it, but I also feel like of crazy looking for an answer and not being able to find one. 

Thanks for all the valuable information!  

[meg-c]

bump

[ironictruth]

Make sure one of the tests is DGP.

Do you have a gallbladder? 

[cyclinglady]

1 hour ago, meg-c said:

bump

Please do not bump a topic.  You got an excellent response from gluten-free in DC who really understands celiac disease and testing.  Here are the specific tests:

Open Original Shared Link

 Do you have a specific question?  

[meg-c]

On 10/9/2016 at 6:42 PM, ironictruth said:

Make sure one of the tests is DGP.

Do you have a gallbladder? 

 

On 10/9/2016 at 6:42 PM, ironictruth said:

Make sure one of the tests is DGP.

Do you have a gallbladder? 

Hi, yes I do have a gallbladder. No issues with it that I'm aware of. Thank you.

[meg-c]

On 10/9/2016 at 8:03 PM, cyclinglady said:

Please do not bump a topic.  You got an excellent response from gluten-free in DC who really understands celiac disease and testing.  Here are the specific tests:

Open Original Shared Link

 Do you have a specific question?  

Hi, my apologizes for bumping it. I am definitely appreciative of gluten-free in DC's response, I was just hoping to hear from some other people. I'm sorry if I was rude. I see my PCP in a week and was just looking for some input on what to ask/recommend I be tested for. Thank you!

[cyclinglady]

No problem.  I would ask that a full celiac panel be run.  For the past five years or more, the experts recommended the TTG tests as the first-line screening test because it was pretty accurate and cheaper than the full panel.  But they found it still did not catch all celiacs (like me who tests positive only to only one of the DGP tests).   My Mom has Graves.  You seem to have a strong genetic background just ripe for celiac disease or  AI issues.

Be nice, but be persistant with your PCP.  Stay on top (now or later).  You are your best health advocate!

[meg-c]

2 hours ago, cyclinglady said:

No problem.  I would ask that a full celiac panel be run.  For the past five years or more, the experts recommended the TTG tests as the first-line screening test because it was pretty accurate and cheaper than the full panel.  But they found it still did not catch all celiacs (like me who tests positive only to only one of the DGP tests).   My Mom has Graves.  You seem to have a strong genetic background just ripe for celiac disease or  AI issues.

Be nice, but be persistant with your PCP.  Stay on top (now or later).  You are your best health advocate!

Thank you for the response and suggestion. The reason for the visit is that my PCP wants to rule out intestinal stuff, so I'm assuming she has celiac in mind. She did mention in at the last visit, but I was not tested for it. Thankfully, my PCP is very receptive to my suggestions. 

I agree with having a strong genetic background for autoimmune diseases, which frankly makes me a bit nervous. Just looking forward to getting to the bottom of this. 

Take care and thanks again! 

[GFinDC]

Hi Meg-c,

This thread on temprament issues might be interesting to you.  Celiac disease can affect the brain though a couple of avenues.  One is a direct attack on brain cells causing gluten ataxia, another is nutrient deficiencies from mal-absorption.  Neither is all that fun.  Just being sick and in pain for a long time can cause anxiety/depression in some wimpizoids. (No, I wasn't talking about me, stop looking at me like that!) 

Losing 50 lbs is no small event.  Some people go through extensive diet and exercise programs to try and lose that much weight.  If you were on a tv program you could probably win a prize!  

Celiac disease can cause damage to the villi lining the small intestine.  That damage can make it hard for your gut/body to absorb nutrients (vitamins, minerals, fats).  Those turn out to be pretty darn important to keeping a human body operating well.

Weight loss or failure to thrive is a classic celiac symptom.  D and C are often present but can be unpredictable.  Sometimes people have no GI symptoms at all, but may have a skin rash or joint pain, or many other possible symptoms.  Or no symptoms at all.  Weird world much?

Thanks for being understanding about the bumping warning.  The mods have been fighting a recent rising tide of bumping without grinding on the forum.  It's one of those rules most people don't even notice when signing up.

Thanks for posting the link to the test info cyclinglady!

[meg-c]

Sorry I didn't reply to this sooner. Thank you for the resources, I appreciate it.

Well I just finished my visit with my PCP and it was a pretty great appointment. I've lost 55 lbs since the beginning of the year. She was asking me for suggestions and my opinions on things. She ran a Celiac panel (only IgA and TTG) along with ferritin and a few other things. Thankfully, unlike my endocrinologist, she doesn't think it's anxiety related as she knows I've always been a nervous, high-strung person. Now, we wait for the results... sometimes waiting is the worst part. If the celiac comes back negative, she is referring me to a nutritionist.  

Thanks again everyone! 

[squirmingitch]

Meg, which test of the full panel didn't she run? Did she say or did you ask why? Did it have to do with your insurance? I know some but not all, insurance will only allow a GI doc to run the full panel - if that is the case with yours, then if your blood comes back negative, I would request a referral to a GI who specializes in celiac.

[meg-c]

The two tests that were done regarding celiac were IgA and Tissue Transglutimase. I'm not sure why the others weren't done, though I've seen that the TTG is the most reliable. We'll see about the referral. 

 

Thanks! 

[cyclinglady]

9 hours ago, meg-c said:

The two tests that were done regarding celiac were IgA and Tissue Transglutimase. I'm not sure why the others weren't done, though I've seen that the TTG is the most reliable. We'll see about the referral. 

 

Thanks! 

The TTG test is really good.  Except it is not perfect.  It is ordered because if doctors (and insurance companies) could only choose one celiac test, the TTG would be it.  (My new insurance company only allows their doctors access to the TTG and only a GI can order the entire panel).   The bad news is that it does not catch all celiacs.  So, if you test negative to the TTG,  can you really rule out celiac disease?  No.  

If the doctor has a strong suspicion of celiac disease and the TTG is negative, he'll order the rest of the panel and maybe even the endoscopy.  If the doctor is celiac-savvy and is not restrained by insurance guidelines, he'll order the whole panel right off the bat.  It's $80 vs. $400 dollars (very roughly).    It's all about the money.  

[meg-c]

Hey everyone, hope you're all having a good day. 

So I just heard back from my doctor, apparently everything was completely normal. I'm being referred to a nutritionist because she thinks there may be a deficiency in my diet... 

I'm in tears as I right this - I'm not sure if its relief or frustration. I'm thankful that it's not celiac, yet beyond annoyed that I cannot find a diagnosis. 

I wish you guys all the best. Thank you for all the knowledge you have provided me with. 

Take care! 

[cyclinglady]

That is great news!  Please make sure a complete celiac panel was taken which includes the EMA and DGP.  Do not just trust the doctor's word.  See the test results in writing.   I would just hate to find that a mistake was made.  In any case, make sure they find the root cause of your illness.  

 

[meg-c]

I agree, it's good news and bad news in my opinion. The only tests that were done were IgA and TTG IgA. I'm going to ask for them to send me copies of the lab information. 

I'm really trying to find the cause. Not being able to figure it out is making me crazy. I hate going and only getting normal lab tests. Ugh. I should be happy I'm healthy but I'm not healthy if I feel like this, right?! 

Anyways, thanks for all your help. Much appreciated.

[GFinDC]

Hi meg,

A deficiency is classic celiac territory.  Celiac disease can cause mal-absorption which leads to vitamin and mineral deficiencies.  There has to be a reason for you to have  a deficiency.  Don't give up looking for the cause.  Celiacs tend to have trouble absorbing the fat soluble vitamins.  The sometimes have very good cholesterol readings, also because of mal-absorption.

[meg-c]

Hi everyone! I just have a question about a weak positive tTG IgA...

So I just picked up my lab results from my doctor's office. My tTG IgA looks well within the normal range according to the labs, but I was doing some research and have a question regarding a "weak positive". Now I know no one here is fit to diagnosis but my tTG was as followed.

tTG IgA: 5 units [0-19 units] 

but, this website says otherwise. 

Open Original Shared Link

Any insight on this? Am I reading way too much into this? 

 

Thanks! 

 

Edit: I should add that my ferritin was also pretty low. It was 11 ng/mL

[cyclinglady]

I'd say that TTg IGA is negative and would not consider it a weak positive, but....I am not a doctor!  ?  I do know that each lab has different ranges and you should just compare your results with the ranges the lab uses (not from the Internet). 

Your ferritin is low and your doctor should find the reason why it is low.  Again, celiac disease can not be ruled out until you have  the complete panel run.  Why?  I have never had a positive TTG test even in follow-up testing (biopsies: Marsh Stage IIIB).  I test positive ONLY to the DGP IGA.  

Get the rest of the celiac panel.  

[meg-c]

Cyclinglady - 

Negative was also what I was thinking. The reference range at my lab does not give a negative, weak positive, and positive range, rather just a normal range. I just found that while scouring the internet. Seem like a lot of other people on here are give weak positive ranges as well. Anyways, I'm sure I'm reading way into this and it's nothing. 

Very interesting that you never presented with a positive tTG IgA with such damage to your intestines. 

No mention from my doctor concerning the low ferritin either. I only saw it when I was reading my own lab tests. Do you have any suggestions for what could be causing this?

For the full celiac panel, is that something I should probably see a GI for?

Thanks again for all your helpful suggestions!  

[cyclinglady]

I would ask for a GI referral if your PCP is not authorized to order the rest of the celiac  panel. 

[meg-c]

Okay, thank you for the advice!