The Year Long Battle with Major Neurological Symptoms...

by Jennifer
(Chicago IL)

I am not one to write on these types of blogs... however, at this time in my life, if I can help even one person, then it is worth it.

My 12 year old daughter started having severe neurological symptoms. Seizure like activity, along with headaches, muscle aches and fatigue. At times, she would become so fatigued that she could not move or speak.

The doctors kept telling us she was having a psychological problem. Too much pressure at school, problems with friends, etc. The one thing that they would not listen to, was that none of that pertained to her! She was an A student, had many friends, and would always come home and talk about the good and bad of her day.

After 9 months, she continued to complain of muscle aches, fatigue, and headaches. As for myself, I have had years of feeling fatigue, migraines, muscle and joint aches.

A year ago, I was having horrible abdominal distention, gas, belching, and felt nauseous. After arguing with my doctor, he agreed to do a HIDA scan, and it revealed a non functioning gallbladder. I had it removed in December.

Over the course of the last year, I gained 40 pounds, had increased fatigue, increased migraines, and increased irritability. Again, I was told it was all stress.

In October I decided to get a flu shot, (which I had not had in many years). Just 48 hours after my shot, I became incredibly light sensitive, with severe continuous headache, dizziness, and stumbled a lot! I was dropping things, and having chest discomfort. My blood pressure became unstable.

At first I thought it was a reaction to the flu vaccine. However, after 4-5 weeks, the symptoms still persisted. At one point, I became so weak that I could not move or talk.... just like my daughter. I stumbled upon the gluten problem only by accident.

I had not eaten much for a couple of days, and was feeling a little better. Then, I had pizza at work, a sandwich with bread for a snack, and then the following morning, I had a doughnut with my boys. Then it hit me... I began feeling nerve tingling, bad headache, and weakness.

That day, I decided no more gluten... My symptoms improved after just 4 days off of gluten. I met with a GI doctor, and had an Upper Endoscopy to check for Celiac Disease, but the test was negative. So, I just have gluten sensitivity without Celiac!!

I Hope this helps others to recognize what might be their own, similar symptoms of gluten sensitivity.

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Sep 08, 2012
 This is like Looking in a Mirror!
by: Monica

When I was about 12 years old, I began having symptoms much like your daughter's. I was an athlete and a picky eater and I had what I call "bounce back moments" of feeling much better.

As I became older, I began having more subtle symptoms but I figured it was age. My daughter began having symptoms around the same age. I considered that she wasn't getting the nutrition she needs. She's another picky eater.

So we did the vitamins and such to give her energy. Well, to make a long story short, I took a H1N1 (swine flu) shot in 2009. I worked in public health so I had done my research since this was a fairly new vaccine. Anyway, I had severe neurological symptoms---dizziness, unstable gait, headaches, etc---that I attributed to side effects. After about a year of tests, I was diagnosed with Fibromyalgia, and eventually Malignant Hypertension. My blood pressure went from stable to UNSTABLE. I had a HIDA scan and a CT of my abdomen to check my kidneys and gallbladder, but it showed Celiac artery blockage which was a surprise finding. (editor's note:) (Blockage of the artery leading to the stomach and liver, called the celiac artery. It is the
first major branch of the abdominal aorta).

My doctors won't do anything about it because they're saying an angiogram would be more precise, but invasive, and to correct it may cause other problems.

I changed my diet recently to lose weight, and it includes wheat. I began getting sicker and my stomach looked as if I were 6 months pregnant. It inflates and deflates. I began doing research after finding that I cannot eat as much and I get a headache often. After stumbling upon your story, I believe I need to do more research with my doctors.
Mar 21, 2012
 Shots Reaction
by: Jennifer

In reference to why the shots cause a problem... my thought is this. Your immune system is already under stress dealing with the gluten problem, then is thrown into overdrive with the injections.

Additionally, you could ask for the lot number of the medication, then you could find out specific information on that shot. My new doctor has helped me a ton! I am now off of gluten, dairy, and on a high protein, low carbohydrate diet. I have had edema in my legs/feet for years, but no one could tell me why. Finally, with the dietary changes, it is going away.

Don't ever let a doctor tell you that it is stress or related to some other source. I'm a nurse, and it's unfortunate, but many doctors do not want to even consider food sensitivities as a result of problems. My advice... find a doctor who is open to food issues. Good luck.
Mar 20, 2012
 Celiac, Seizures, Speech, and Shots.
by: Anonymous

I had a similar situation, but I am following a Celiac diet. I have "brain fog", confusion, speech issues, and had seizures. I was having allergy immunizations.

After the first seizure, I suspected the shots and stopped them and was fine. After calling the allergy doctor, I was assured there could be no relation between the shots and the seizures, so I started them again about a year later. Soon, the seizures started again.

My primary care Dr. and Neurologists discounted the shots and were telling me that I was just under stress. One doctor tried to tell me that it was related to sexual abuse as a child. When I told him there had been no abuse, he told me that I just didn't remember.

I stopped the shots again. The seizures stopped and the speech issues improved, but did not go away. I let my doctor convince me to have a flu shot. The next day, I became very confused, lethargic, and my family told me I was not acting myself. That I was on another planet.

Within a week, I had another seizure. No more shots, no more seizures. I later read that many of the shots contain MSG, which can contain gluten. I do not know what other ingredients are in them. Can anyone help me to understand the apparent relationship?
Jan 28, 2012
 Similar story
by: Sweetea888

I have a similar story. I started having serious problems when I went to college, and they only got worse over time. I was misdiagnosed for 30 plus years.

I was told I had IBS, Spastic Colon, "nervous stomach," and was tested for Crohn's Disease and for Diverticulitis, (both of which were ruled out) before I was tested for Celiac Disease.

The blood test was inconclusive, but suggested that I didn't have it. The Gastroenterologist I went to bet me $50 I didn't have it. But my Internal Medicine doctor insisted that I have a Colonoscopy, when the Endoscopy was negative for Celiac Disease. She also insisted that they biopsy EVERYWHERE. It turned out that I did have Celiac Disease, but there was only one small area, about the size of a fifty cent piece, where there was definite Celiac damage. It was in a hard to reach area close to the Ileo-Cecal Valve.

If they had only done a few biopsies, I probably wouldn't have been diagnosed and I would not have stopped eating gluten-filled food. Once I stopped eating gluten, I got MUCH better. My Fibromyalgia improved soooo much, my stomach problems disappeared, and the neurological problems (tingling, numbness, mental haze) began to improve.

You may very well have Celiac Disease, and they just didn't find evidence because you only had an Endoscopy. (Mine didn't find anything either.) Anyway, the most important thing is that you aren't eating gluten. Good luck!

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