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My Story


Audiori J

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Audiori J Newbie

Heres my symptoms, in order by when they started;

Childhood;

Bad tooth enamel (cavities)

Aches and Pain in my legs at night

In my Teens add on;

Sinus issues

Insomnia (When I finally get to sleep, I have a hard time waking up)

Allergies

Angioneuroedema (allergy to aspirin causing facial swelling)

Lack of weight gain

TMJ or jaw popping

Migraines

Occassional canker sores

In my Twenties add on;

Always cold

Dry Skin

Dehydration

Periods of Depression

In my Thirties add on;

Fatigue

Back Pain

Alternating Constipation/Diarrhea

Cramps after eating

Then lately add to the list;

Intermittant Lactose Intollerance

And lastly and this is a weird one, I have what I thought was a skin allergy. I would go outside and put my arm through a fence to pet my dog and anywhere my arm touched the wire fence I would get about 5 minutes later red, itchy welp lines. Then it started happening at night if I scratch my arms or back, the welps would form where I scratched. And it would cause more itchiness. I was thinking this may be in association with dermatitis herpetiformis. It even happened on my thumb and finger the other day when I opened a bottle. I can actually slightly run my fingernails across my forearm and sit and watch the welps appear.

*** Turns out this is Dermatographism.

I went to an allergist to get tested for specifically food allergies, they did the 135 pin pricks in the arm test; woohoo. But they chose to do all airborne allergies instead of foods, found I had a slight allergy to mold and grass and thats it. (Which I already knew, I wanted tested for foods. pffft doctors.) But while looking into why I had severe sinus issues they found out I had a maxillary sinus cyst that required surgery, I was put under and they did the surgery through my mouth. This caused a dislocated jaw on the side where I have the TMJ. This caused extreme severe joint pain. I was in more pain than the doctors acted like they thought I should be in. It was severe 24/hr a day pain, I couldn't think or sleep. I went to a TMJ specialist and now wear a splint that alleviates that issue.

Long story short, I believe most of my issues are caused by Gluten. I believe my TMJ and dislocated jaw issues were made more severe by just an already present sensitivity to joint pain. The Angioneuroedema may not be related but I didn't always have that issue it came on around the same time as the sinus issues because I used to take aspirin for the sinus headaches.

I was planning on having the blood test done, but because I am pretty convinced Gluten is the issue I have started to change my diet already. I used to crave Pasta, Bread and Cereal. I've tried to avoid Gluten starting this week.

One last thing with my Migraines, I usually start burping before the Migraine comes on, after it comes on I get nausea which is followed by vomitting bile. The doctor I go to for Migraines says this is normal for Migraines. Which is true, but its not normal for humans. <_< It tells me its digestive related.


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Sweetfudge Community Regular

Welcome! OMG what an ordeal! Some of your symptoms sound like me. I've always had bad teeth. I had lots of leg pains as a child too!

One suggestion. If you do go off gluten, and get tested, this usually results in a negative result, as your intestines begin to heal. I suggest either waiting on the gluten-free diet, getting the test done ASAP, or just self-dxing and swear off gluten, avoiding the test.

I hope you get better soon!

Audiori J Newbie

Yeah maybe I should get the blood test done now.

Strange thing, after not eating any Gluten filled products a few days I have had a headache, I had less fatigue and my skin feels like its burning.

Sweetfudge Community Regular

you're experiencing withdrawals...it should go away in a few more days. hang in there :) yes, the sooner the better on that biopsy!

super-sally888 Contributor

Hi,

Have you been tested for thryoid? Your symptoms could also be from that... Also people with Celiac Disease often have thyroid problems and vice versa... which comes first????

Best wishes on getting this sorted out.

S

happygirl Collaborator

you have to eat gluten for the test to be remotely accurate.

make sure your docs run the FULL panel (print out from www.celiaccenter.org and click on FAQs)...sometimes docs only run part of the panel and you need it all.

best of luck,

Laura

Ursa Major Collaborator

You may be intolerant to gluten, but you're also very likely intolerant to other foods as well. The welts could be an allergic reaction caused by food, but brought on by scratching your skin. I used to have that problem, too.

I had joint and muscle pain. The joint pain (very severe) was caused by lectins (gluten is a lectin, and they ALL cause gastrointestinal symptoms in me, as well as the joint pains, buckling of the ankles and knees and backaches), and the muscle and skin aches (as well as hives and being itchy all over) was caused by salicylates. And Aspirin is pure salicylic acid and the worst offender, and could put me into anaphylactic shock.

Since you're allergic to Aspirin, you probably can't tolerate foods high in salicylates, either, and need to eliminate them.

To find out more, click on the links in my signature.


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Audiori J Newbie

Ive not been tested for any thyroid problems either. Pretty much all of my issues sort of come and go, intermittant, Thats why for a while I thought it was seasonal, or the weather, and then food allergy. I dont know enough about thyroid issues to know if they can come and go?

On the Gluten, part of my diet was already gluten free, I could of by accident gone a few days with none and then had a gluten heavy day or two. Sort of like going from a few days of meat and potato to pizza and a slice of cake. I sort of figure this random diet that I had before could explain the random timing of the symptoms.

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      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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