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Frustrated After A Decade Of Not Feeling Good -- Any Ideas?!

jlee2

By jlee2
in Coping with Celiac Disease

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jlee2 Rookie
jlee2
Posted

Hi everyone! I thought I would share my story and see if anyone has any ideas on how to start feeling better. My only thought was to do something like the Paleo diet but I do enjoy the odd pre packaged and ready to go foods lol. Anyways here goes;

I am 22 and at the age of 12 I developed severe stomach problems -- after much testing and frustration they decided it was lactose intolerance. I stopped all dairy. After not feeling better they diagnosed me with IBS and I was told there is nothing they could do for me basically go home and try to figure out my trigger foods. I never did start feeling better so I started getting passed around different physicians and Gastro's none really caring to help all that much. Started getting depressed. Took myself off gluten. Finally found a doc who cared enough to order a scope but it came back neg for celiac as I was not eating gluten. I got a parasite from swimming in a river, then got C Diff from antibiotics. (what a great summer that was). Started eating gluten again and was formally diagnosed with celiac. Since then I have been extremely strict and growing up my family was great with it (2 aunts have celiac so we all knew what it was about). I go through extremely bad phases still where somedays I will get so sick I have to be hospitalized for a week due to severe dehydration. I never know if it is from the celiac or IBS. I have had 4 gastroscopy's, 2 colonoscopy's, 1 endoscopy, 2 CT scans, an MRI, a radio active white blood cell scan, 2 ultrasounds, barium x-rays, and thousands of blood tests. I have seen the best doctor at the U of A Dr. Fedorak and he called me his mystery patient and left it at that. I have seen holistic healers nutritionists etc. If anyone can help please please do so! I am sick and tired of being sick. Thankfully my boyfriend of 5 years has supported me through everything and almost gone gluten-free himself lol!

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mushroom Proficient
mushroom
Posted

I would agree with your docs that you are a mystery patient. Did you notice any improvement from gluten free? Are you dairy free right now? Have you ever had anyone treat you for leaky gut syndrome? Have your doctors measured your nutrient levels, your ferritin, your thyroid functioning? Have you recently been tested for candida, parasites, SIBO (small intestinal bacterial overgrowth)?

Can you tell us what your current symptoms are and how and when they manifest themselves so we might understand better?

captaincrab55 Collaborator
captaincrab55
Posted

Hi everyone! I thought I would share my story and see if anyone has any ideas on how to start feeling better.

jlee2, Have you tried an Environmental Allergist ??? I'm working through some issues currently.. Just this month, I've been to the GI, Food Allergy Testing (negative to all 27 foods tested for) and the Butt & Gut Scopes.. Waiting for the biopsy report... The Food Allergist did warn me to beware of the Snake Oil Salesmen out there, but did mention that an Environmental Allergist may find an issue with one of the foods that I tested negative to.. That being said, pending the scope results I started checking out other options... The person that runs Corn Freedom recommended Dr Richard E Layton, 20 minutes from my house... His wed site does cover many of my issues... If my GI doesn't have a solution to my issues this Thursday, Dr Layton will most likely be my next stop...

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Watery eyes, a runny nose, headaches-these are symptoms commonly associated with allergies. But what are allergies? To a vast majority of pediatricians, allergists, family physicians and internists, the term "allergy" is limited to hay fever, asthma, eczema, and conjunctivitis. This definition focuses on the roles of pollens, cats and dogs, dust mites, and molds which provoke symptoms in children and adults involving only the eyes, nose, skin and lungs. This classification, however, is limited and does not consider the food, chemical, and additive allergies that many patients experience. In fact, an allergy is a malfunction of the immune system resulting in a wide variety of medical conditions in children and adults. Allergies can cause a multitude of symptoms including:

Nose: Itching

Sneezing

Stuffiness

Postnasal drip

Throat: Sore throat

Hoarseness

Throat clearing

Eyes: Itching

Redness

Increased Tearing

Respiratory System: Coughing

Wheezing

Gastrointestinal: Bloating

Diarrhea

Constipation

Increased gas

Skin: Hives

Eczema

Neurologic: Headaches

jlee2 Rookie
jlee2
Posted
  • Author

That sounds interesting, when will you have your scope results? And which city is it that you live in? I have had environmental testing done years and years ago as a kid but it might be worth trying again!?

captaincrab55 Collaborator
captaincrab55
Posted

That sounds interesting, when will you have your scope results? And which city is it that you live in? I have had environmental testing done years and years ago as a kid but it might be worth trying again!?

I'll get the scope results Thursday... I live between Baltimore and Bel Air, Maryland ...

jlee2, Where did you have your testing done???

jlee2 Rookie
jlee2
Posted
  • Author

I live in a small town in Alberta, Canada. My testing has been done around here in surrounding towns or in Edmonton which is 2 hours away.

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