RoxLive

I was answering an email on line and got very long winded. But since I basically spilled out so much of our story with Celiac Disease, I thought I would post it. The original question is on the bottom of this post. Here you go….

It sounds like the pain was related to gluten, but I am not doctor.  Sharp pain like that in the intestinal track is very common. Having it radiate to other positions like your back or other side is also common from those I know with Celiac Disease or maybe even a gluten intolerance although that line is getting more grey as time goes on. They feel like gluten intolerance is only a precursor to celiac disease.

I know when going gluten free, we could tell an immediate change. After three days, we felt so much better. After two weeks, it was amazing. It wasn’t’ that we were SO sick, it was that we never felt real good. My husband and son got diagnosed at the same time.

My son was 17 and his acne was awful! We could get it clear, but if he did anything wrong like touch his face or sneeze it seemed (not sneeze, but you know what I mean) it would flair up again. I took him into the doctor for that, and when we were there, we mentioned that he was also choking on his food on occasion. I thought it was only every other month, but he told the doctor that he would choke on his food every week at school. The doctor sent him for a scope, was told that he probably had Celiac Disease but we would wait for the biopsy. As we read the info on Celiacs, I realized that my husband had more typical symptoms than my son. His best friends were Ammonium and Pepcid to help with diarrhea and heart burn. Always really gassy. Looking back, my son was sometimes so fatigued, he couldn’t even get off the couch. He is really active usually, so I just figured he had worn himself out.  They both went for the blood test and it came back positive.

We went 100% gluten free (I am pretty anal about it) and like I said, I remember the bench marks of 3 days and 2 weeks and we knew we would never put them on gluten again.

Now when they get gluten or barley it effects them different.  I think in the last 7 years, they have only had true gluten twice each at different times. It put my husband completely out for 4 days and bad effects for a full 2 or 3 weeks.

If my husband gets a crumb of wheat through cross contact, after 20 minutes he gets sharp pains. He says it is like a small dough ball with needles poking out of it. It hits his small intestine and he can feel it as it makes the first 3 turns. Many times he is in cold sweat and curled up on the floor in a ball. After 20 minutes, the harsh pain is gone and he is fatigued. He may or may not need to go to the bathroom and then goes to bed. So tired. Can’t move. The next day he usually wakes up and is better.

Barley is different. His stomach gets kind of bubbley after eating it. After 20 minutes he has to get to a bathroom right now. No sharp pains there, just uncomfortable.

he has never had cross contact with rye.

His sisters said they didn’t want to go on a gluten free diet because once you do, you are so much more sensitive to wheat and they didn’t want to become more sensitive. So what, you would rather be sick all the time?! Well, they finally repented and are now on their gluten free diet and sticking to it. I don’t know if they are as anal as me about it, but they don’t’ have kids with it yet. I think when your kids get it, you are more cautious.

So, my son never chokes, his face is clear except when he gets cross contact with wheat it will break out two days later, and he goes so much I can barely keep up.

That was 6 or 7 years ago. We figure my son’s celiac disease was triggered when he had a really bad viral infection that lasted about 2 weeks. Missed tons of school, so sick. He had it for about 2 years before he was diagnosed.

My husband, we aren’t sure. At least 8 years from when he lost his job, but as we look back, he wasn’t well for a long time, over a decade.

So once you go gluten free, you cannot do the blood test for Celiac with any accuracy. Even if you do a scope, sometimes the damage is repaired.

Celiac Disease just means you have to eat gluten free the rest of your life. It is genetic. Your kids or grandkids can come up with it at any time in their life if they have that gene after a traumatic experience or a viral infection.

Doctors don’t’ really know what they are doing because there are over 250 symptoms. Well, they know what they are doing, but will miss this many times.

Three months ago, my cousin (not related to my husband’s celiac family) has two daughters she has been trying to find out what is wrong forever.  The 15 year old twin was in the hospital and she was calling me because the doctor wanted to take out her Collin NOW. She asked my opinion and I told her to get out of there and get a second opinion , but after talking some more and after my suggestions of how many things in her family are related to celiac, she put her on a gluten free diet. Within 3 days, her body was back to normal functions, she no longer needed an enima every day to do her business and she was out of pain. After a month of needing one and almost getting her collin out?! Her twin sister has asperger’s. They put her on the diet and her mood swings are much better. So many other symptoms that are different in each one of her siblings but they are all benefiting from the diet. Crazy. Doctors thought she was crazy too. After 8 years of taking her girls in and out of the hospital, she was the one that made the diagnosis and they are all better. Overnight, re-enrolled in public school (they had to be pulled out 3 years ago), socially able to be in a crowd and more.

So there you have it. You aren’t crazy. They were probably related. Doctors don’t know everything. But there are good ones out there. If you mention Celiac, they probably won’t want to spend the $$ to test you. Even if you have insurance. If you already went on the diet, there isnt’ really a need to….except for other members of your family. Your kids, sisters, parents. Because if they have symptoms that are completely different than yours and you can see it being caused by Celiac, they may not believe you and ever go on the diet because it is completely different than yours. And you weren’t really diagnosed with it by a doctor, you just changed yoru diet and they think how in the world could something as ‘simple’ as a diet change really change those things. I have a brother in law that is dying because of a heart problem, a nephew that is so small in stature that is 2 year old brother was bigger than him (he was 5), a neice that is so small and skinny if you blew on her she would fall over, a sister in law that could never have babies because she was infertile. Yep. It is rampant in our family.

So, my biggest friend has been a local support group. I found the Gluten Intolerant Group had a meeting near by. Went. Joined. Got into Leadership. I wanted to eat out, so I started working with Restaurants in the area and their gluten free outlook and options been improved dramatically.  Starting a new Celiac Sprue Association Support group in the area and am not on the Regional Board of Directors. Found a local gluten free bakery that is amazing and became partners (www.newgrains.com) to take us national. Reach other to others like you from my twitter account @roxlive.

Why? Because someone did it for me. Because there are too many people hurting. Because there are too many doctors that don’t know what to do or whatever.

Ok, now I am on my soapbox.  So, the answer is yep! It was probably related. You could find out by going back on gluten, but I wouldn’t. Not that you are feeling better.

Oh, you can do a gene test to see if you have the gene. That way if you do, than you will know that your celiac disease is active and that you should never eat gluten again and you would have proof for your family. Gene test costs about $300 and insurance won’t pay for it. Go figure. Undiagnosed Celiac Disease is the cause and #1 expense in emergency rooms across America…I heard that somewhere or it was something like that.

Ok. Now that you know way too much about me, I hope that it helps. You are not alone. Not crazy. Right on track. Keep up the good work.

–roxanne

Hi Ms. Roxanne,

I hope you are well. Thank you for getting back to me. I am dreadfully sorry that I have taken so long to return your note especially since you were kind enough to offer some advice.

I decided to go gluten free about three months ago. I am in pretty good heath, I just noticed some people that have done the same have lost weight and seem to be pretty healthy, excepting those with serious celiac disease.

Here is my question: Could gluten have caused a pain in my right side?

Now, if you will indulge me, I will elaborate. About 14 years ago I suffered a sharp, stabbing pain just under my right ribcage. It was short but hurt like the dickens. I went to see my doctor and he allowed that since I was 40 the pain was most probably my gall bladder having its way with me. He sent me to be examined with a sonogram. This proved nothing as my faithful gallbladder appeared to be just dandy. He allowed that it might need to be removed just the same. I’d have none of that. But as time crept along I would learn to endure more visits from the pain in my side. Eventually, it became more constant and less sharp and more like the feeling of someone pressing their thumb under my ribs. It may or may not be related but I started getting a pain in the right side of my back as well as if it radiated from the pain in my side.

Over the course of the years, I asked many doctors about the nagging affliction. I had myself a colonoscopy, and two cat scans, all showing a healthy fellow. One doctor friend suggested it might be muscular another an ulcer. Anyway, I got nothing definitive from these learned gents. Then, it was becoming unbearable and the pain was constant. I am a bit of a worrier and I self-diagnosed myself with every disease known to mankind.

Then, I went gluten free. I felt better almost right away and after about three weeks the pain was gone. Now, I occasionally get a glimpse of the pain but it is nothing like before.

Could I have an intolerance to gluten and could it have caused this pain? What do you reckon?

Thank you again for your help. I wish you all the best.

Friend  From Twitter……