Could This Be Celiac Disease?

[Mommabearof3]

Hello, I am so glad I found this board and hopefully someone can relate to what I'm going through.

 

Short background....I'm almost 36, three kids and a long history a various medical issues that have resulted in a lot of surgeries.  Last year was my most complicated one - a complete hysterectomy which took over 5.5 hours because of the amount of scar tissue that had fused my bowels and bladder to everything, most likely caused by my 3 c-sections.  I've always had digestion issues, had my appendix out when I was 21, and still had issues with stomach pain off and on for years.  I also have an egg sensitivity that causes extreme stomach pain, but I can have a small amount of egg if it is baked into something like a cake.  Straight up egg - scrambled or even french toast will double me over for hours - so I avoid them at all costs.

 

Since this past April I've been having only what I can describe as "attacks".  Severe stomach pain, to the point that my husband wanted to take me to the ER, but I refused because I hate that place.  I went to my GP, who thought it was my gallbladder, and ordered an U/S.  That came back as clear, so they told me take prilosec for acid reflux and offered no other testing.  I wasn't happy with that answer, as I was still having random attacks despite the prilosec and a very bland, fat free diet, so I made an appointment with my OBGYN and a GI dr to follow up and try to figure out what is going on.  I've seen the OBGYN who ordered a CT scan, which came back as all clear and said the issue doesn't appear to be in his area, and wants me to see the GI dr.  

 

I see the GI on August 14th, there is a huge waiting list here.  I've been waiting for 2 months already, there are just no appointments.  In the meantime I suffer nearly every day with one symptom or another and no real relief.  I've tried tracking what I eat versus when the attacks come, and can find no rhyme or reason.  I added fat back in to my diet, as it was not making a difference in my symptoms at all.  I can eat pizza one day and have mild discomfort, eat it another day and I am sick as a dog and ready to die.  As I've been doing research on what could possibly be going on, I've come across a lot of info on Celiac Disease and possible symptoms, and now I'm wondering if that is what is going on - I have a lot of the symptoms that I didn't know could be connected.  

 

My symptoms are:

 

I go from constipated to diarrhea with no real reason and can go from one to the other all in the same day.  

 

I have nearly constant dull stomach pain, which flairs to an excruciating level sometimes.  Sometimes eating aggravates it.  When I get one of these attacks, I have pain and cramping in my stomach, heartburn flares up, and I feel like I have to go to the bathroom badly, though nothing comes out.  (sorry for TMI) 

 

A lot of gas and heartburn issues, usually bad when I'm having one of the attacks.

 

I have battled eczema since my teen years and it is still a battle.  Currently sporting a nice patch on my forehead that will just not go away.

 

Joint pain - knees, elbows, hips ache frequently.

 

Was told several years ago by an orthopedist I have carpel tunnel in both wrists when I began experiencing severe pain, burning, tingling and numbness in both hands.  He didn't do any tests, just gave me braces that did not help, and offered to try the surgery but I declined as its not life threatening and I don't need another surgery!  

 

I am constantly tired, fatigued, foggy headed, get dizzy spells, frequent ear infections (have an appointment with an ENT as well because I've had 6 in the last year alone).  I get nasty headaches that can last for several days.

 

My entire body is out of whack and has been for a long time.  I'm tired of feeling sick all the time and not being able to find out what is triggering it.  I woke up this morning in pain, having another attack and it is not subsiding yet.  I didn't even eat anything this morning, it started as soon as I woke up, and I was in the bathroom within 2 minutes.  Then back in the bathroom 20 minutes later, cramping and feeling like I had to go again.

 

I'm just so tired of having all of these problems.  I don't want to be sick.  I have a family to take care of and I'm a real estate agent - I can't afford to not work, and I hate telling my kids that mommy can't play because I'm sick again.  I try to push through as much as I can, but sometimes I just can't and all I want to do is cry.

 

I guess what I want to know is, does this even sound like it could be celiac or am I barking up the wrong tree?  And if it does sound like celiac, can it just flare randomly like this without a trigger?  Does it make sense that it would only be getting worse as I get older and why all of a sudden I have such sever stomach pain?

 

Liz

 

 

 

 

[nvsmom]

Welcome to the board.  

 

Those could very well be symptoms caused by celiac disease.  You might as well get testesd - you have nothing to lose after so much discomfort!

 

To get accurate celiac disease tests you need to be eating gluten (1-2 slices of bread or equivalent) in the 8-12 weeks prior to testing. Do not go gluten-free yet.

 

These are the tests:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

total serum IgA

EMA IgA

AGA IgA and AGA IgG - older and less reliable tests

 

Your regular doctor should be able to order those tests.

 

There is also the endoscopic biopsy, of 6-8 samples, which requires a gluten challenge of only 2-4 weeks.

 

Good luck!

[beth01]

I have gone through every thing you have and more, except the hysterectomy

 

I would go through streaks. Sometimes I would feel really well like there was nothing wrong with me at all.  Most days though I felt pretty cruddy.

 

I can only eat eggs if they are baked or cooked into something.  I use egg beaters for breakfast.

 

When I had flare ups before my diagnosis, my stomach would burn and I would have god awful pain in my left side.  The only thing that seemed to make it better would be the D I would get and then about 10 minutes later it would start all over again. I have a lot of problems with constipation and am on stool softeners and Miralax twice a day.  The only time I ever get diarrhea is if I eat gluten or too much soy.

 

Like Nicole said, get tested. Maybe call your GP and ask if you can have the labs drawn.  They might do that for you and then you will have a leg up when you see the GI.

 

Good luck.  P.s. Pepto and heating pads are life savers, at least for me.

[1desperateladysaved]

Being a mother myself and having gone through years of a like struggle and then finding I had celiac and getting treatment for it. I have to say this sounds similar to my struggle.  Test as much as you can until you are certain of the medical results.  IF the answer is inconclusive, then try the diet and keep records of the results.

 

Welcome and Get Better Soon ***.

 

Dee

[Mommabearof3]

I was finally able to get back here, its been a crazy few weeks between work, not feeling good, and another doctor visit that led no where.

 

My appointment with the GI dr is in two weeks, and I am patiently trying to wait.

 

I ended up needing an emergency appointment with my OBGYN surgeon on the 23rd.  I had a severe "attack" on Friday the 18th, bad bad bad pain, migraine headache, severe fatigue.  I was a mess. Then I woke up Saturday morning and I had (sorry for TMI) vaginal spotting.  I had a complete hysterectomy last year, any kind of bleeding or spotting should be impossible.  This is the second time it has happened, the first time the doctor ordered a ultrasound and a CT scan, both came back as normal except for a small cyst on my left ovary.  Dr chalked it up to a freak occurrence and we didn't expect it to repeat, except it did 3.5 weeks later!  What we have come to determine now is that I am most likely either developing endometriosis after the surgery or it was missed during surgery, and I am experiencing monthly cycles again.  Waiting to see if it happens again in a few weeks, and if it does I have to get in with the OBGYN as soon as it starts.  Not fun and really disappointing to have to deal with this on top of my stomach issues!

 

The OBGYN also wants the GI to do a colonoscopy and an endoscope because even though he doesn't think they are all related, he wants it ruled out as a cause of the vaginal bleeding.  I'm still suffering with daily stomach pain, but it is very different then the pain I get when I have one of the bleeding episodes.  I don't know anymore, I feel like I'm falling apart.  I'm constantly tired, constantly in one kind of pain or another.  I keep getting nasty headaches, and fatigue so bad that I get dizzy spells and can't function.  I honestly feel like I'm dying sometimes, and it scares me.  I've been keeping a food diary, to try to match up my symptoms to what I have eaten, but it has become difficult as I am constantly in pain and it doesn't seem connected to anything in particular anymore.

 

I try not to complain to my husband, he'll ask how I am and I just say fine.  He gets too worried and then upset when he can't "fix" anything.  Sorry to vent, I just am really down today about all of this.  I woke up in pain, am still in pain, my head hurts, and I'm exhausted despite sleeping for 9 hours last night.  Oh, and to add just a little more icing to my already overloaded cake, I have to see an ENT next week because I have ANOTHER ear infection, the 6th one this year.  

 

 

Liz