Worries, Doubts, Questions...from A Professional Food Writer Who Might Have Celiac

[Elissa]

Hi everyone--

Thanks so much for this great forum.

Maybe some of you can shed some light: I'm currently 44 years old. 18 months ago, I awoke one morning with the worst abdominal pain I've ever had. It was like someone was tugging at my insides, and so, being perimenopausal, I went to my internist and my gyn. The former (whom I like very much) was convinced via my family history (Dad had Crohn's, cousin died of Crohn's, healthy aunt just had re-section, etc) that I had IBS and put me on Mobic and Hyocyamine. My gyn was very concerned that it was ovarian, but all tests -- blood workup, several ultrasounds, etc -- came up negative: I am perimenopausal but otherwise gynecologically healthy. He agreed that it might be intestinal, but didn't believe that it was IBS, as my movements are fairly normal (sorry for the graphics folks). Since that time, the pain runs the gamut from excrutiating to just very mild; at times, I'm dizzy and times I'm not. I've felt fluish on and off, and have been treated for Lyme twice.

18 months and 1 extremely normal colonoscopy later, I landed in a local ER last weekend: I had severe left sided pain, but my CT scan came up normal---no pancreatitis, no enlarged spleen, no enlarged liver, stomach clear, etc etc etc. What did come up in my bloodwork though were slightly elevated liver enzymes, which the docs attributed to my being on a statin. (WBC, RBC counts all normal.) A few days later, I was home in bed with severe flu-like symptoms including body aches, low-grade fever, nausea (but no vomiting). It's better now (I'm on doxycycline in case I didn't kick the Lyme the last time), and I'm going to see a gastro person next week.

As I said, I'm a professional food writer; right before the worst symptoms hit, my partner and I grilled a homemade pizza--homemade dough--and seven hours later I was praying to god to kill me. I've never had such bad pain and I've been wobbly ever since.

Can someone tell me what the pain-related symptoms of Celiac are? I've experienced no weight loss or gain----just what I've described above.

Many thanks for your kind help,

Elissa

[Eriella]

Hello,

My big trigger was also abdominal pain from eating "bread". I landed in the ER twice and had several emergency doctors visits. I would suggest asking your doctor to order a blood test and then try going gluten free for 2-3 months (and yes-- this is extremely difficult, but possible, while eating out and cooking gourmet. It gives a new challenge to chefs). If it is a gluten sensitivity or celiac disease, the only 100% way of knowing for those who are symptomatic is by not eating any gluten. There are several tests to rule it in, but none to rule it out.

If you have any questions, please ask!

[melmak5]

Elissa,

I second Eriella's post about asking your doctor to get the blood tests done ASAP.

I was diagnosed in June and I am finishing up my MA in gastronomy, worked 1 day a week in a bakery, and also am a food writer part-time.

Please feel free to pm me if you are or aren't positive.

It felt like it was the end of my world, but I promise you, its not!! Yes, I had to leave the bakery, yes I have had to shift where I go out to eat and what I eat, and yes, my writing topics and style have changed, but I an tell you... I am so much more detail oriented! I NEED to know the where/why/how of food, which forces you to be a really good journalist.

I was also in pain, lots of pain. It was so bad I often couldn't sit or turn to the side. It does get better... it took me until just last week to finally be able to say it, but it does.

If you are positive, please know it is not the end of your career, its just the start of a new chapter. (sorry if that comes off as cliche, but I truly believe it)

I wish you all the best in getting healthy.

Kristina

[Elissa]

Thank you all SO much---I can't tell you how much I appreciate your responses.

My career, although it is very active and very visible (I write for the Trib Syndicate, the NY Times, etc), is the least of my worries right now---I just want to feel good again.

Thank you all again---stay tuned.....

Elissa

[gfpaperdoll]

All your symptoms sound like it could be celiac. That pain in the left side is very common & a lot of people that I know had that. One of my new friends went to the gastro for years & he could never find out what was wrong, she could not sleep at night because the pain was so bad. I also hear of a lot of people that get sick on pizza, I think that it is the combination of the gluten, yeast, & cheese (dairy) that does you in so quickly.

Let us know what you find out...

[Guest andie]

Hi everyone--

Thanks so much for this great forum.

Maybe some of you can shed some light: I'm currently 44 years old. 18 months ago, I awoke one morning with the worst abdominal pain I've ever had. It was like someone was tugging at my insides, and so, being perimenopausal, I went to my internist and my gyn. The former (whom I like very much) was convinced via my family history (Dad had Crohn's, cousin died of Crohn's, healthy aunt just had re-section, etc) that I had IBS and put me on Mobic and Hyocyamine. My gyn was very concerned that it was ovarian, but all tests -- blood workup, several ultrasounds, etc -- came up negative: I am perimenopausal but otherwise gynecologically healthy. He agreed that it might be intestinal, but didn't believe that it was IBS, as my movements are fairly normal (sorry for the graphics folks). Since that time, the pain runs the gamut from excrutiating to just very mild; at times, I'm dizzy and times I'm not. I've felt fluish on and off, and have been treated for Lyme twice.

18 months and 1 extremely normal colonoscopy later, I landed in a local ER last weekend: I had severe left sided pain, but my CT scan came up normal---no pancreatitis, no enlarged spleen, no enlarged liver, stomach clear, etc etc etc. What did come up in my bloodwork though were slightly elevated liver enzymes, which the docs attributed to my being on a statin. (WBC, RBC counts all normal.) A few days later, I was home in bed with severe flu-like symptoms including body aches, low-grade fever, nausea (but no vomiting). It's better now (I'm on doxycycline in case I didn't kick the Lyme the last time), and I'm going to see a gastro person next week.

As I said, I'm a professional food writer; right before the worst symptoms hit, my partner and I grilled a homemade pizza--homemade dough--and seven hours later I was praying to god to kill me. I've never had such bad pain and I've been wobbly ever since.

Can someone tell me what the pain-related symptoms of Celiac are? I've experienced no weight loss or gain----just what I've described above.

Many thanks for your kind help,

Elissa

Elissa

An interesting case.

Sudden onset abd pain sounds a bit fishy for celiac. True it can be 'triggered', but usually from another illness, severe stress etc.

These do not sound like classic celiac symptoms.

From reading through the many articles posted here, there is generally some type of 'chronic' illness attached to the otherwise classic symptoms. Vague unexplained happenings in the body. ie chronic headaches, chronic fatigue, bouts of unexplained diarrhea and constipation, anemia, low B12/folate, some form of autoimmune disease (psoriais)

I'm certain they would have looked at your gallbladder, but sometimes stones will be passed into the gut via the common bile duct during the painful episode, but gone when x-ray taken. While the stone is in the duct it blocks the normal bile flow and backs up a bit to the liver, explaining the elevated enzymes. Did you have the pain while they did the CT? I haven't read anywhere yet that the liver enzymes were affected.

If symptoms continue unexplained and still no relief, try the diet. The literature suggests up to 18 months for results. We noticed a big change in 2. At the very least it will give you a new angle to explore in your line of work. Post your findings on the web site. I know you will make alot of people happy to that end. Head to southern Ontario. Good gluten free restaurants are hard to find in this neck of the woods.

hope this helps and you're feeling well soon

Andie

P.S. Even if you don't start the diet, explore the availability of gluten free when you do your reviews. It would be an eye opening experience for yourself and help educate the food world to our dilema.

[mommida]

Many Celiacs have posted about the elevated liver enzymes results of their tests.

Is that how you found this site, by Googling "elevated liver enzymes"?

The symptoms for Celiac are unique to the individual. Some have no symptoms - but a blood test shows anemia, others are violently ill within minutes of consumption.

L.

[WW340]

The pain and symptoms you are describing are almost exactly the symptoms I was having at the crescendo of this disease for me.

In Dec. I developed the worst left sided stomach pain I had ever had. It awakened me from sleep. I would wake up my husband and tell him to get ready to take me too the ER. I would then vomit violently and the pain would improve. Then an intense all over itching would start. The pain, nausea, and itching would lessen, but not totally go away. I felt like I had the flu with aching all over and low grade fever.

I finally realized that the severe pain would only occur in the mornings after I had eaten triskets or shredded wheat. The milder symptoms were with me all the time. Then I developed terrible diarrhea, weight loss and increasing fatigue.

I still thought I had the flu for a while, but after 6 solid weeks of flu like symptoms and the constant itching I decided there was much more going on. I too had elevated liver enzymes even prior to this episode. My GI says this is common in celiac and he expected them to return to normal on the diet, which they have.

I had symptoms when I was younger and was diagnosed with ulcerative colitis, ulcers, IBS. I also had esophageal candida yeast at one point. But in the months leading to diagnosis, I had only been experiencing fatigue and some reflux until December.