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Shannon.Mann

Help! Is what i am dealing with all because of Celiac Disease?

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ill start from the begining so please bear with me. Mid march i woke up one morning with an itchy burny sensation on my left side so i went to the dr's and she said i had shingles and gave me meds, a week later somthing weird started happening to me, my side started to feel swollen and tight and i just didnt feel well i couldnt be in the house i felt trapped and like i was dying that lasted a few days befor i got into see my dr and when i got in to see her she could tell i wasnt well. My heart was racing at 129 bpm, i felt like i couldnt breathe etc. she sent me to the hospital for an ECG and everything was fine so she called me back into her office and a bunch of testing begain. I was tested for Thyroid issues, enlarged spleen, so much blood work, ECG's, x-rays, ultrasounds on pelvic and abdomen etc and all tests came back negative. So she came to the conclusion of generalized anxiety disorder and i spent about 8 months dealing with anxiety and panic attacks and so many trips to the drs and emerg. Eventually someone told me to try gluten free diet so i did and my anxiety went almost completely away so my dr tested me for celiac disease and the tests came back positive now i am just waiting for the endoscopy which my dr isnt making me eat gluten for because of how bad i feel. Syptoms have included: Anxiety/Panic attacks, racing heart, heart burn and indegestion, side feeling tight and swollen even though its not and only my left side, burny itchy sensation, chest pains, altered senseation feeling in my left like and foot, back hurting, constipation, hair is shedding more then normal, lost 30lbs, bloating, 3 missed periods so far, get little red dots on mt abdomen when i ingest gluten, head aches, sinus and head preasure, stuffed up nose, fluid behind ear drums, post nasal drip, blood shot eyes, headaches. Most days i am feeling better but my side still feels tight and swollen, constipation comes and goes but i find i react dferently to other foods now too. I cant eat dairy, eggs, sugar really acts weird in me, potatoes and corn. Today i made cookies with honey and banana instead of sugar and egg and my side started hurting more, i felt so off and y heart started racing. Has anyone dealt with all of this? i keep thinking being 7 weeks off gluten i should be feeling alot better by now but i have also been dealing with alot of stress with christmas coming and all the activities leading up to it, 2 children 3 and 5 who have been acting up alot, trying to figure out what foods i can eat that dont bug me too much, Dr's appointments and now my daughter has to go through testing for it. Please hep i want to know i am not alone and people have been dealing with all the same stuff i have and it not be anything worse. this has been a really long 9 months and i am drained, sad, scared, etc.

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Hi Shannon,

Yes, celiac disease can cause many different symptoms.  Many of them aren't real fun.  Recovery from celiac disease is a somewhat slow process for some people.  It can take quite a while to get better.  It is helpful if you change your diet to give your body and digestive system an easy job.  Try to avoid all processed foods until you feel better for a while.  Eat mostly whole foods like meats, veggies, nuts, fruits, eggs.  Stop all dairy for a few months if you feel symptoms after eating it.  Don't eat in restaurants for a good few months, until you are feeling better.

Going gluten-free is a learning experience and isn't something people master in a few days.  The immune system reaction can last for weeks to months and it only takes a tiny amount of gluten to kick it off in high gear.  So you have to be careful.

While all this may sound tough to do, it is worth it if you start feeling better.

Welcome to the forum Shannon! :)

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I had many of these symptoms. If you go on a gluten free diet your endoscopy will be no good. I know this because my GI doctor did it to me. Unfortunately you must eat normally for the test to be accurate. The having trouble with dairy and other foods are probably because you have to let your intestines heal first before you reintroduce those foods back into your diet. Going gluten-free sucks but if you got to do it GFinDC is 100% right. It takes time. I've been trying now for 3 years and still have set backs. Good luck and hang in there. It gets better but you need to give it time and let your gut heal before you start eating out and eating processed foods again.

IMPORTANT: i would call your GI and ask if being on a gluten-free diet before your endoscopy will give bad results. That happened to me and I had to do another.

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22 minutes ago, pdm1981 said:

I had many of these symptoms. If you go on a gluten free diet your endoscopy will be no good. I know this because my GI doctor did it to me. Unfortunately you must eat normally for the test to be accurate. The having trouble with dairy and other foods are probably because you have to let your intestines heal first before you reintroduce those foods back into your diet. Going gluten-free sucks but if you got to do it GFinDC is 100% right. It takes time. I've been trying now for 3 years and still have set backs. Good luck and hang in there. It gets better but you need to give it time and let your gut heal before you start eating out and eating processed foods again.

IMPORTANT: i would call your GI and ask if being on a gluten-free diet before your endoscopy will give bad results. That happened to me and I had to do another.

Thank you for your reply. Yes we are aware that the endoscopy could come back negative, i did go back on it but i couldnt handle it and i explained that and she said to still have it done even without the gluten in my system and that just from my blood work alone she is saying i have celiac disease, i was already 3 weeks off gluten when she did the blood test and it still came back positive and from the sounds of it the levels were really high. Is the Endoscopy awful? I am terrified to have it done

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The endoscopy isn't that bad except you lose a day because of the sedation. If your levels were still high after 3 weeks on the gluten-free diet, you might still be ingesting gluten. I might be wrong and if anyone reading this can correct me, I thought the healing process starts pretty quickly and the blood tests numbers start to drop fast after you start a true and strict gluten-free diet. The numbers should start dropping but the damage to your gut can take up to over a year to completely heal. Does anyone else got any ideas why her numbers are so high after 3 weeks?

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1 hour ago, pdm1981 said:

The endoscopy isn't that bad except you lose a day because of the sedation. If your levels were still high after 3 weeks on the gluten-free diet, you might still be ingesting gluten. I might be wrong and if anyone reading this can correct me, I thought the healing process starts pretty quickly and the blood tests numbers start to drop fast after you start a true and strict gluten-free diet. The numbers should start dropping but the damage to your gut can take up to over a year to completely heal. Does anyone else got any ideas why her numbers are so high after 3 weeks?

Antibodies can take a long time to rise and to drop.  A gluten challenge requires a person to consume gluten daily for 8 to 12 weeks  in order to get an accurate celiac  blood test.  

I got glutened last summer.  My antibodies were measured four weeks after my initial glutening.  They were off the charts.   They continued to rise even after being on a strict gluten-free diet.   It took months to heal (about six) and that is just me.  Remember, celiac disease is an autoimmune disorder that happens to be triggered by gluten.  Other AI disorders (lupus, MS, RA, thyroiditis, etc.) have no known triggers (some say a virus, bacteria, stress, etc.). Once a flare up starts, it can go on and on......

As long as the antibodies are heading in a downward direction, most doctors are happy.  Many folks take over a year to drop their antibodies to the normal range.  Some heal much faster than others.  We are all different!  

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Shannon,

My heart goes out to you!  With two little ones and the holidays soon approaching, I can imagine the stress and anxiety you must be feeling (and made worse by being ill).  You need help!  Take a few minutes to make a plan of all your activities and chores.  Then start crossing off a few if possible.  This is the time to simplify.  Buy cookies -- don't bake.  Cut out any extra entertaining.  Do not volunteer for anything (let those other parents help at church and school).   Do you have  any family members who can assist you?  Clean your house?  Watch the kids while you shop?  Hire a mothers helper?  (I paid a 6th grader to watch my child while i paid bills, etc. In the other room).  Keep menus very simple, etc.

The holidays are meant to be enjoyed. It is all about the people in our lives and not the stuff!  Your kids are little and will not know the difference if a few corners are cut.  

Hugs! 

 

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