Nope not Celiac...I have CROHN's Disease instead

yesterday i had a great day. weather was temperate, met up with a friend i haven't seen in 5 years, had lunch with the girls, took a beautiful walk, and won a card table from a local pharmacy's drawing!


today, i find out the blood test came back negative for thyroid problems (specifically hyperthyroidism) but...

I HAVE CROHN'S DISEASE.

an answer...finally. after 10 years.

Went to see the Doctor

last monday, december 3, i finally had my appointment. doc said she doesn't think it's celiac because of the blood test results. she didn't mention anything about false negatives nor did she think all my symptoms added up to be celiac. however, she did order more blood and urine tests and after seeing the results of them, may consider an endoscopy.

she was concerned that i could have crohn's disease and/or thyroid disease, hyperthyroidism.

the blood tests should give some answers. she also mentioned the possibility of a colonoscopy.

ugh.

Celiac panel blood tests results

well, good news and bad news.

my test results came in and it's negative. the normal values for the total serum IgA are 44-441 and my number is 167.

good news, right? sort of. according to my this one test, i don't have celiac BUT i have read that folks with ADVANCED celiac disease often get negative results. the only way to know for sure is via endoscopy.

i have my appointment with Dr. Martin on monday, in 5 days, to discuss the symptoms and what next.

if i have it or not, i really want to go gluten free for a couple months to see if i (and the rest of my family) feel better. but i can't start it until all the tests are done. argh.

More Blood Tests

Today blood was drawn to check my iron and lead levels.

human pin cushion.

Still waiting for results of the celiac panel.

Bad Breath and Dental Issues?

Is there a correlation between bad breath and CD? I've only done a quick search but it makes sense to me.

And what about dental issues like root canals? I've had two done. The dental correlation may be a long shot.

Hypoglycemia - Major symptom I forgot to list

There's another symptom I forgot to add in my symptoms list a couple days ago -

Hypoglycemia

My blood sugar levels are loony. But it is awfully scary when I have a hypoglycemic episode. I can't move, get sweaty, and shake. Then I will eat almost anything in order for the feeling to pass. I try to control this with eating several small meals a day but I still get these episodes.

Again I wonder if the hypoglycemia is due to celiac disease and I'm not absorbing the proper nutrients, thus, my blood sugar levels are on a constant roller coaster ride?

Or is the hypoglycemia due to poor diet or diabetes? But I eat pretty well and I've been tested for diabetes when pregnant two years ago.

Another cold sore and that YUCKY feeling

This is my third cold sore in three weeks. I've never had a breakout one after the other like this. I hate these ugly blisters. I look like an untouchable.

Also got that yucky, dull headache, tight neck muscle feeling. Where's the acetaminophen?

What's causing all this? Could it be I have celiac disease and have a compromised immune system that can't get this virus to go back into hibernation? Do I have leaky gut syndrome and full of toxicity? Is it just hormonal? Stress?

Oh, one day I'll have answers. Until then, to the medicine cabinet I go.

Another symptom

After reading the symptom list on celiaccenter.org, I realized I have ANOTHER one - lactose intolerance. It isn't severe but I definitely have a sensitivity. I don't drink milk but indulge in ice cream once in a while with some discomfort.

Called Dr.'s Office for Results

It's been 5 days since my blood was drawn for testing so I was hoping for an answer today. But the results weren't in. Gotta have p-a-t-i-e-n-c-e!

No Celiac for Baby

Pediatrician's office called to let me know that the blood test show that my son does not have celiac disease and that he's allowed to eat wheat and gluten. Great news...right?

Of course, I'm happy. But I could have sworn that the gluten was affecting his sleep. He wakes ever 2-3 hours. I still think I'm gonna try 3 months gluten diet for him and see if that changes anything. Maybe the iron supplements will help too.

My long list of SymPtoms

Just so you know when you read this list...I am a healthy, active, normally functioning adult:) For the most part, these symptoms come and go. You wouldn't look at me and think, "gosh she's a sicky."

These are the reasons I suspect celiac:

1. gas (frequent, not constant)
   
2. missed menstrual periods*
3. PCOS (polycystic ovarian syndrome)*
4. cold sores (1x/6-8weeks outside mouth)*
   
5. mouth ulcers (4x/year inside mouth)*
6. hair loss/thinning*
7. feelings of unbalance/dizziness
8. tight muscles* (chronic, everyday)
   
9. migraine headaches (1x/every other month)
   
10. congested pores/combination complexion*
11. mild asthma (rarely flares up)
    
12. irritability*
13. was a very colicky baby
14. not breastfed as a baby
15. petite stature
    
16. several years ago i had emergency abdominal surgery for excruciating pain and no one knew what caused it*

On second thought...
2&3 - menstrual issues - but these could be due to genes or stress or a whole bunch of other reasons

4 - cold sores - but these could be caused by stress, high arginine/low lysine diet, weather, menstruation

5 - mouth ulcers - but these could be caused by poor diet, poor dental hygiene

6 - hair loss - but this could be due to iron deficiency (which could be due to celiac) or the aging process

8&12 - tight muscles & irritability - but these could be from running after a toddler all day long

10 - bad complexion - this could be because of genes or unhealthy diet (but I do eat pretty healthy i.e. no fast food)

This is why celiac disease is so hard to diagnose because the symptoms are so varied from person to person. No one has the same ones.

Now the Kicker...
15 - it's possible that my guts were so damaged from celiac disease that i landed in the hospital getting my belly operated on a few years ago. the docs could not give any explanation for my pain. now i have a 6 inch scar for no apparent reason.

but I may be getting an answer soon when the tests come back. i've been waiting for one.

Baby's Blood Test results

Some of Baby's blood test results back today and they show he is anemic. I should note that he is a healthy, chubby, active, social baby - not sick looking or sullen. So I would have never had known this if I didn't get the tests done.

Results:
iron - normal values are 40-175 and his is 22
ferritin - normal values are 22-322 and his is 5
hemoglobin - normal values about 10.5/11 and his is 9.5
hematocrit - normal values 33-37 and his is 31.7

Pediatrician prescribed ferrous sulfate. I went to pick it up with a lot of reservations because I know how iron supplements can cause constipation. That's the last thing I want is to add another issue for the lil guy. But he is anemic, so off I went. When I bought it, on the bag was written "Place in back of throat so it will not stain teeth." Ack! He's only had his teeth for a couple months and I'm suppose to give him something that might permanently stain them?

Also a few weeks ago we tried the poly-vi-sol with iron. Baby hated it. It taste awful. He vomited it back up. So we stopped that. With this scene in mind, concern about the teeth, and constipation I was hoping for an alternative.

And I got one...
a friend suggested Floradix and I'm glad she did. It's easy to digest and highly absorbable. Plus the taste is so much better. It tastes like prunes (I drank some). More info about this can be found at this link.

I wonder if I return this prescription?

Pediatrician requested his blood be tested for lead since the iron levels are so low.

Now the questions begin...
is he anemic because
1)he has celiac disease or a gluten intolerance and can't absorb nutrients properly?
2) he isn't getting the proper amount of iron in the breastmilk because I may be anemic?
3)there is lead in his system?
4)he has a viral infection? I read somewhere that a viral infection can cause anemia.

I also read somewhere that deficiency in iron or zinc can cause toddlers to bite i.e. themselves, others, shirt, blankets, etc. He's been a biting spree of late. I thought it was just teething, which it still may be.

Baby's Update

Today Baby and I went to the pediatrician to do a recheck on his iron levels because they were a bit low a month ago. Also he has been dealing with acute eczema and a nasty diaper rash. He's had dry skin before but not like this and he has never had a diaper rash before. This could all be due to him eating more different kinds of foods lately like bananas and raisins and/or he could be gluten sensitive. When I explained to the pediatrician that I got tested for celiac she went ahead and ordered the test for him too.

So I'll get an answer about him in a few days too. Such a load of to know answers will be coming.

But then...what to do with those answers....

Got the Blood Test!

Dr. Martin's office called late this afternoon and told me that I could get the ball rolling by having the blood test done first. I was so relieved, I went immediately. So I will have some sort of answer in about 4 days instead of 21+. Phew.

The test is the Celiac Serology by Prometheus Therapeutics & Diagnostics
which will test:
anti-human tissue transglutaminase (Hu-fTG) IgA recombinant antigen
anti-endomysial IgA
anti-gliadin IgA
Total serum IgA
anti-gliadin IgG

A great article on the interpretation of the test results is found on celiac.com
here's the link

Gastroenterologist Appointment made

Well, I have an appointment with Dr. Kathleen Martin of Gastro Care Center on Monday, December 3 - three weeks away! urgh. I explained that I'm breastfeeding and I suspect my son has a gluten intolerance, thus, I'd like to begin a gluten-free diet asap but that didn't make any difference in getting an appointment earlier.

I did call UK to see when the first available appointment was with one of their gastroenterologist - 6 weeks away. I'll keep this one with Dr. Martin.
In case you're wondering...I can't go gluten-free until after the blood test because it wouldn't be an accurate reading if I drastically alter my diet.

Update on my son...he has a major diaper rash and a runny nose with congestion. His suspected eczema is still present but getting better. I'm sure this isn't all gluten related.

Finding a doctor to get tested

Step 1 of finding out if I have celiac disease -

getting blood tests

It would make sense that I go see the doctor that gave the talk the other day but that would be too easy. University of Kentucky Hospital has about 16 physicians in their Digestive Health Department. I narrowed it down to three docs: Dr. Arsenescu (the one who gave the talk), Dr. de Villiers (specializes in celiac disease), or Dr. Selby (specializes in Women's GI health).

But after thinking about how big UK is and it's a teaching hospital, I looked around for alternatives. I found Gastro Care Center (Gastroenterology Care Center) which is affiliated (I'm pretty sure) with St. Joseph's Hospital, which is smaller than UK. So tomorrow I will see if I can get in to see Dr. Martin or Dr. Haas. Both are women, which is my preference.

Why am I doing this blog?

Good question. Well, it's my way of chronicling what I think will be a journey to get answers to my health issues that I've been dealing with for so many years. Also, I hope to help others as they search for answers.

So let's begin...

November 9, 2007
I attended a free discussion at WildOats grocery store on gluten free living that I saw in on their flyer when I did some shopping. My interest was sparked because for the last couple of days, I've been questioning if my 14 month old son has a gluten sensitivity. He broke out in a rash that resembled eczema last week. His back, back, elbows, and thighs were scaly and itchy. And so, the guessing game began - was it the change in weather, the new laundry detergent (Free Clear All), and/or a food allergy? If it's a food allergy, could it be the waffles he's eating for breakfast, the organic honey crackers he loves, and/or the peanut butter cereal pops he loves as a special snack?

The talk actually turned out to be about celiac disease given by Dr. Razvan Arsenescu of University of Kentucky's Hospital Digestive Health Department. The lecture was only 30 minutes but full of useful info and blow-you-away stats - such as it is guessed that 1 in 300 Americans have CD and most are undiagnosed. Also if CD goes undiagnosed, cancers can develop.
About 20 or so people were packed into the little corner of the store eagerly listening, eagerly hoping to find answers. Many were already diagnosed with CD, others were concerned they or a loved one has it. I sat there confused. Do I have this disease? Have I had it for 10, 20, 30 years or all my life?
Funny, if the talk would have been titled, "celiac disease," I wouldn't have been interested.