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Sparkleflower

Desperate For Answers After Too Many Years

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Hello everyone,

 

I'm new here but I've been looking through the forum for a while and have found it really helpful. I just wanted to share my story and see if anyone can help me!

 

Basically I'm 31 and was diagnosed with IBS at 14. I have suffered with terrible bloating and alternating C and D for years and have lost count of the number of times I have tried to eliminate gluten from my diet. The trouble is I always get drawn back to it and am always craving foods with it in. After I had my daughter 3 years ago though I have been hit by a wave of symptoms that have become pretty debilitating of late and I'm really starting to worry.

 

Symptoms:

- history of on/off depression in last 10 years

- brain fog 

- spaced out feeling

- exhausted

- problems with my memory

- painful, stiff joints

- itchy bumps on my face and neck

- red, itchy bumps have appeared on parts of my  lower back and thighs

- sudden onset of panic attacks (no previous history of)

- vertigo and problems with balance

- aggressive outbursts following a period of re-introduction of gluten into my diet 

- night terrors

-swollen stomach (look 6 months pregnant)

- cravings for wheat based foods

- apparent withdrawals upon stopping gluten

 

This has all become so scary yet numerous trips to the doctor have resulted in them trying to give me anti depressants (which I can't take as allergic!)  Finally after showing the list to one dr she clicked her fingers and said 'coeliac.'  I'm starting to feel like it's all in my head though. I just KNOW something is very wrong because I've had problems with wheat most of my life. I was born with a strong allergic reaction to dairy and had to go on dairy free milk for years and even to this day can only tolerate small amounts so there has always been issues with my stomach. 

 

I've been referred to a a gastro and dietitan but the appointments take forever so in the meantime I have also been referred to immunology to test for allergies.  My bloods were negative though so been told it might be a strong gluten sensitivity.  I'm just so down at the moment because many people just laugh when I tell them what I think it is. I had to have 3 weeks off work recently and it took a while to convince my boss. Any words of wisdom from anyone to help get me through?

 

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Hello everyone,

 

I'm new here but I've been looking through the forum for a while and have found it really helpful. I just wanted to share my story and see if anyone can help me!

 

Basically I'm 31 and was diagnosed with IBS at 14. I have suffered with terrible bloating and alternating C and D for years and have lost count of the number of times I have tried to eliminate gluten from my diet. The trouble is I always get drawn back to it and am always craving foods with it in. After I had my daughter 3 years ago though I have been hit by a wave of symptoms that have become pretty debilitating of late and I'm really starting to worry.

 

Symptoms:

- history of on/off depression in last 10 years

- brain fog 

- spaced out feeling

- exhausted

- problems with my memory

- painful, stiff joints

- itchy bumps on my face and neck

- red, itchy bumps have appeared on parts of my  lower back and thighs

- sudden onset of panic attacks (no previous history of)

- vertigo and problems with balance

- aggressive outbursts following a period of re-introduction of gluten into my diet 

- night terrors

-swollen stomach (look 6 months pregnant)

- cravings for wheat based foods

- apparent withdrawals upon stopping gluten

 

This has all become so scary yet numerous trips to the doctor have resulted in them trying to give me anti depressants (which I can't take as allergic!)  Finally after showing the list to one dr she clicked her fingers and said 'coeliac.'  I'm starting to feel like it's all in my head though. I just KNOW something is very wrong because I've had problems with wheat most of my life. I was born with a strong allergic reaction to dairy and had to go on dairy free milk for years and even to this day can only tolerate small amounts so there has always been issues with my stomach. 

 

I've been referred to a a gastro and dietitan but the appointments take forever so in the meantime I have also been referred to immunology to test for allergies.  My bloods were negative though so been told it might be a strong gluten sensitivity.  I'm just so down at the moment because many people just laugh when I tell them what I think it is. I had to have 3 weeks off work recently and it took a while to convince my boss. Any words of wisdom from anyone to help get me through?

Aw....I think you are on the right track and should get ALL of the tests for Celiac disease.  You need to be fully convinced to stick to your diet.  I hope your flower will be sparkling better soon.

 

  You have pointed out that you did have a POSITIVE to the response to the response to diet test.  I find any slight mistake I make on the diet brings consequences, so I am bound and determined to follow the diet.  This began only 4 days after I started the diet in earnest.  Now, after 18 months, I am feeling much better and do not want to lose this feeling.  I hope you will be motivated that strongly.  I hope you will be feeling better soon.

 

I had some of the same symptoms:

Brain Fog

Extreme Fatigue

Tummy looking pregnant, I got asked more than once when the baby was due.

Withdrawal symptoms.

 

These went away.  I wake up with a clear mind in the morning and am ready to go!  My mind has cleared, my tummy still has some work, but I don't always look pregnant.  Think of getting a clear mind and some energy.  How much would you pay for that?  I would give up my bread and my butter and I have!   Even though I really liked bread; it was no way worth it.  I am so glad I gave it up to be "back from nowhere."  I hope you will make those decisions and also will find the support you need.  Many others around won't understand, but hopefully one day they will come around.

 

Get Well***

 

D

 

Whatever it takes to convince you, you better do that.

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welcome  :)

 

I think you should definitely get tested based on what you wrote above.  Remember in order for tests to be accurate you MUST be actively consuming gluten.  Here is a list of blood tests to request from your GP or GI:

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 
are you able to go to your GP and ask for these tests instead of waiting for your GI appointment?  also I suggest always getting copies of your test results.  You can post them here for others to comment.  good luck!

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Sorry to hear that you're struggling so much - if you still have the rash, you might consider having a knowledgeable doctor/dermatologist take a look as if you do have celiac disease, it could be dermatitis herpetiformis (the celiac rash).  If I understand this correctly, in cases of dermatitis herpetiformis, a positive skin biopsy gives the same unequivocal result as an intestinal biopsy - in other words, there are no false positives with a skin biopsy (although, especially if the doctor taking the biopsy is not familiar with how to take it - *next* to the lesions, there could probably be false negatives, so it's important to find someone with knowledge of how to do the biopsy)

 

So if you have spots resembling dermatitis herpetiformis, go get a biopsy and get some answers!!

 

Hope you feel better soon!

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