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Possible Celiac Since Birth?

JSegura226

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JSegura226 Apprentice
JSegura226
Posted

Hi everybody =D My medication makes it hard to focus on the screen so bare with me with spelling and grammar mistakes please.

My name is James and I came across this forum while researching possible diseases and syndromes that relate to the symptoms I have been experiencing. I was unfamiliar with Celiac Disease before today and many of the posts I have read so far on this forum hit home for me. I would love to get some opinions from members on my currant condition and where I should go from here because honestly, I am at a loss and am feeling depressed. Let me give you a little of my medical background.....

I am currently 5ft 7 inches tall and only weigh 106 lbs. Medications I currently take are Albuterol for Asthma when needed. Flagyl 500mg (on my 7th day) for colitis and Bentyl 10mg for bad cramps.

My normal weight before this last bad stomach episode(which has lasted almost a month)was between 111-116 lbs which was still very small. I have almost no body fat and very vascular in both my arms and legs from being so lean.(I always look like I am flexing).

I am currently 27 years old and have suffered from stomach aches/nausea after eating as long as I can remember. As a baby I was always very fussy and very frequently threw up. Throughout my whole childhood I was afraid to go to restaurants due to the fact that I knew I was going to either have a bad upset stomach after I ate, or I was going to throw up the food. This made eating a public a very scary thing for me.

At 9 months old I had a very random seizure, which doctors could not explain.

At age 6 while playing with my father in the living room, he noticed a slight curvature of my spine. The next day my parents made an appointment with my pediatrician. A week later, I was diagnosed with Scoliosis.

Another problem I dealt with from the ages of 5-14 were night terrors. I would sometimes get them 2 times a week... My parents, grandparents and siblings tell me stories today about how I would wake up randomly in a full blown night sweat, screaming at the top of my lungs... Then I would run around the house yelling in panic as if I was in a walking nightmare =( Sometimes the only way to bring me out of the panic was throwing me in a cold shower. I stopped having these night terrors around the age of 14.

From the ages of 6-13, my parents and pediatrician kept a very close eye on my scoliosis. When I reached the age of 15, they discovered that my scoliosis started to curve more aggressively and surgery was suggested. It was suggested by the orthopedic surgeon that my parents and I should wait til I had developed more because I would stop growing in height after the bone fusion/rod surgery. At that time I was 5ft tall, weighed 90 lbs and did not have a single pubic hair on my body. Doctors noticed that i was very underdeveloped compared to other children my age and they told my parents to think about hormone therapy to help induce puberty so they can do the surgery sooner. My parents said hell no to that..

At the age of 17 it was time for surgery. I was 5ft 3inches tall and weighed 105 lbs. My Scoliosis had become so bad that my lower spine was 3 inches into my left side, almost poking out. The pain was unbearable. My Orthopedic surgeon told my parents that he had never treated such aggressive case in a male.. During routine pre-surgery tests, my doctors found another bone deformity... Chiari 1 Malformation on the back of my skull. That year I had surgeries to repair both chiari 1 and extreme scoliosis.

From age 18 til now, I have suffered with the same frequent nausea and throwing up when eating random foods. I have had on and off Diarrhea and loose stool for the last 8 years..I have battled to stay at 115 lbs. I tried eating everything in sight and nothing was working to gain weight. My digestive system has just been getting progressively worse. I asked my family doctor about a year ago if he had any opinions on why I could not maintain weight. He said he would run some tests and let me know.. he ran basic bloodwork, checked my thyroid and performed an EKG.. all coming back normal and sent me on my way..

===============================================

6 weeks ago I developed new symptoms..

These symptoms are:

Loose oily yellow stool or Diarrhea

Complete loss of energy

Depression

Bad Night sweats

Dry heaves and Nausea in the morning

Very yellow Urine in the morning

Extremely bad smelling gas (rotten eggs)

Cramps in my lower abdomen and left side that make me want to cry

Bloating

Constantly have the urge to defecate but cannot

=================================================

Admitted to the ER a week ago where blood-work and CT scan were performed. Doctor said my white count was fine I had slight inflammation of my colon. He told me it was most likely colitis, gave me a antibiotic and sent me home.

Went to my GI 2 days after the ER visit and he bascially just agreed with the ER doctor, scheduled a colonoscopy and gave me some bentyl for pain in the mean time.

6 days on Flagyl and the only thing that is gone is my gas.

So here I am now wondering if things that I eat everyday like bread, pasta, pretzels or anything containing wheat have been making me sick all along... I don't think I have ever gone one day in my life without eating gluten in some form.

Any opinions or suggestions on where to go from here? Does it sound like I might have Celiac?

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ravenwoodglass Mentor
ravenwoodglass
Posted

You have been through a lot. You should ask your doctor for a full celiac panel while you are still eating gluten. That is a good place to start. They may also want to do an endo on you. I don't know why doctors don't just routinely do one when they do the lower scope when folks have had stomach problems for years.

Yes it is possible to be celiac from infancy or birth. I have one child that likely had it from birth and another who developed it a bit later in childhood. Welcome to the board, after you have had all the celiac testing you choose to do then go strictly gluten free no matter what the results as false negatives are not uncommon.

JSegura226 Apprentice
JSegura226
Posted
  • Author

You have been through a lot. You should ask your doctor for a full celiac panel while you are still eating gluten. That is a good place to start. They may also want to do an endo on you. I don't know why doctors don't just routinely do one when they do the lower scope when folks have had stomach problems for years.

Yes it is possible to be celiac from infancy or birth. I have one child that likely had it from birth and another who developed it a bit later in childhood. Welcome to the board, after you have had all the celiac testing you choose to do then go strictly gluten free no matter what the results as false negatives are not uncommon.

They cannot perform the test if I am currently gluten free? I have not touched gluten in almost 24 hours and already noticing a difference = /

mushroom Proficient
mushroom
Posted

They can perform the test, but if you are not eating a full gluten diet at the time of testing the results will be invalid. 24 hours will not make a difference, but get back on gluten right away, or the antibodies which they test for in the blood will disappear, and (we would hope) your small intestine which they biopsy for damage will start to heal. You have waited and suffered this long, do it a while longer. Do explain to the doctor that you are fairly sure that the cause of your symptoms is celiac disease and make sure he does the endoscopy at the time of the colonoscoppy, and that he takes at least six different samples from the small intestine when he does so. Read up on celiac as much as you can before the appointment so you can let him know you are not just 'whistling in the wind.' :) Make a list of all your symptoms which match celiac symptoms and show it to him.

JSegura226 Apprentice
JSegura226
Posted
  • Author

They can perform the test, but if you are not eating a full gluten diet at the time of testing the results will be invalid. 24 hours will not make a difference, but get back on gluten right away, or the antibodies which they test for in the blood will disappear, and (we would hope) your small intestine which they biopsy for damage will start to heal. You have waited and suffered this long, do it a while longer. Do explain to the doctor that you are fairly sure that the cause of your symptoms is celiac disease and make sure he does the endoscopy at the time of the colonoscoppy, and that he takes at least six different samples from the small intestine when he does so. Read up on celiac as much as you can before the appointment so you can let him know you are not just 'whistling in the wind.' :) Make a list of all your symptoms which match celiac symptoms and show it to him.

Great Information. Thank you

JSegura226 Apprentice
JSegura226
Posted
  • Author

Well, I developed a new symptom today.. not sure if it is celiac related.. but does anybody ever have lots of undigested food in their stool??? I know its gross, but My colon has been killing me.. almost impossible to sleep at night because of the pain and the last 2 times I have gone numero dos, my stool was extremely loose and full of undigested food (mushrooms,rice, vegetables or whatever food I ate a day prior).

I have an appointment with my GI next week and will bring this up also, but I just wanted to know before hand if anybody else experiences this.

mushroom Proficient
mushroom
Posted

Yes, undigested food is a very common occurrence. That is why your body has not been getting proper nutrition - because your digestive system is not working well. Most of us in the beginning, and some of us for a lot longer, take digestive enzymes to help the pancreas out, because it has not been getting the nutrients it needs to function properly either - it's a vicious cycle. Gluten seems to put your pancreas on holiday, so you will need to provide your intestine with what the pancreas normally does when it is on the job. :) Find a local good health food store and talk to them about a good gluten free enzyme supplement. Or someone on here may be able to recommend one. I have had good results with Nature's Plus Ultra-Zyme.

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JSegura226 Apprentice
JSegura226
Posted
  • Author

Yes, undigested food is a very common occurrence. That is why your body has not been getting proper nutrition - because your digestive system is not working well. Most of us in the beginning, and some of us for a lot longer, take digestive enzymes to help the pancreas out, because it has not been getting the nutrients it needs to function properly either - it's a vicious cycle. Gluten seems to put your pancreas on holiday, so you will need to provide your intestine with what the pancreas normally does when it is on the job. :) Find a local good health food store and talk to them about a good gluten free enzyme supplement. Or someone on here may be able to recommend one. I have had good results with Nature's Plus Ultra-Zyme.

Thanks Mushroom .. I keep feeling weaker and weaker everyday unfortunately. I found maximum strength, chewables and the activated digestive aid.. which one do you recommend?

JSegura226 Apprentice
JSegura226
Posted
  • Author

Also, if my pancreas is on done, would that explain the hypoglycemia I have been experiencing this last week?? I had a bowl of rice yesterday that made me have an episode of dizzyness, confusion, and I was so tired I could not even move...

mushroom Proficient
mushroom
Posted

I know a lot of posters have trouble with hypoglycemia but I am sorry, I do not know what triggers it.

I am not familiar with the chewable digestive enzymes. The only other product I have used which I would also recommend was purchased from a naturopath - it is called NutriVitamin Enzyme Complex and is a very good product - however, I don't know where you would get it. The manufacturer is Integrative Therapeutics. I hope others will make some recommendations for you.

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