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Desperate For Answers
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Hello, I came to celiac.com because I'm hoping someone can help me. I have not been diagnosed with Celiac disease.. mostly because I am 22 years old and do not have health insurance nor do I qualify for any state assistance..but it seems to make sense.
 
About a year and a half ago it began. I would feel fine, eat a meal, and vomit almost instantly. This continued to happen every now and then. It could be days or weeks apart. I haven't been able to drink cow's milk since I was twelve. It would make me throw up most times and if I had too much dairy from other sources (Pizza, ice cream) I would get sick as well. So I eliminated dairy. But it kept happening. As the weeks passed it became more frequent. So I started eliminating gluten in August. After a few weeks of that I felt great! It was then that I realized that I have hardly ever consumed a meal and not felt sick to my stomach. It was a revelation.... or so I thought. By December  I was vomiting again almost after every meal. I was exhausted and had horrible chest pain. Finially I went to the emergency room where they did some tests and told me that my gall bladder had stopped functioning. Soon thereafter I had surgery and had it removed. Before the surgery my doctor told me I had to start eating wheat again because I was losing too much weight. ( I had lost 20 lbs. Down to 108) So I did. And to my surprise, I did not get sick. This lasted about three months. Then it started all over again. Now I have stopped consuming gluten again. But when I do get it accidently... (cross-contamination, failure to ask the right questions, etc) I get very nausous, my heart rate speeds up, I feel as if I have to breathe deeply because I'm just not getting enough oxygen. I become exhausted for the rest of the day if not a couple days... I have vomited on a few occasions. I cannot eat things that have been fried or cooked in the same oil as things that contain gluten either. I haven't been able to eat oatmeal without feeling nauseous since I was a child...Does this sound like celiac disease?I had an endoscopy before my surgery. But it came back negative for Celiac disease. However I hadn't been eating gluten for several months by then. Plus whenever I mentioned the possibility, I felt like they were just passing over the issue....  I don't know what to do, I feel like even though I'm sticking to this diet, I'm still not feeling as good as I should . Then this morning, I threw up before I had even finished my breakfast... I had Kix Cerael, half a cup of coffee and almond milk in my cerael.. No gluten right? I'm so confused. If anyone has any thoughts or ideas, I would really appreciate them!!! Thank You!!!!
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hi

 

i cant give you any medical advice coz not been here long myself. but it sounds like you have decided that the gluten free diet is for you. to have the relevant testing you would have to reintroduce gluten again and it sounds like you would have a hard time with this. you obviously have a problem with gluten and dairy but many people have other underlining food intolerances as well .really all you can do is start a food diary and write down what you ate and when and how you feel and if you were sick.

 

i know its not gonna help you much but ive given up gluten and dairy as well- my results came back negative. i think now ive got a problem with eggs or nightshade veg( tomatoes ,potatoes,peppers, aubergines) ive been putting it off but im gonna have to do a food diary...

 

as for your breakfast you may have an intolerance to the coffee- it can be quite harsh on your already inflamed stomach. or a problem with the almond nuts in your milk. the cereal i dont know of coz im in the uk but have you read the ingredients - is there any soy in it anywhere? it could even be an additive, colouring,flavouring,preservative ect. 

really your only option if you cant get to a doctor for tests is a food diary - you,ll see a pattern emerge within a few weeks.

good luck with this and i hope you feel better x  

and now im gonna listen to my own advice and get that food diary ready for in the morning lol :)

 

let us know how you get on, remember you are not alone, ask as many questions as you want, people will answer and try to help.

 

 

 

 

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hi

 

i cant give you any medical advice coz not been here long myself. but it sounds like you have decided that the gluten free diet is for you. to have the relevant testing you would have to reintroduce gluten again and it sounds like you would have a hard time with this. you obviously have a problem with gluten and dairy but many people have other underlining food intolerances as well .really all you can do is start a food diary and write down what you ate and when and how you feel and if you were sick.

 

i know its not gonna help you much but ive given up gluten and dairy as well- my results came back negative. i think now ive got a problem with eggs or nightshade veg( tomatoes ,potatoes,peppers, aubergines) ive been putting it off but im gonna have to do a food diary...

 

as for your breakfast you may have an intolerance to the coffee- it can be quite harsh on your already inflamed stomach. or a problem with the almond nuts in your milk. the cereal i dont know of coz im in the uk but have you read the ingredients - is there any soy in it anywhere? it could even be an additive, colouring,flavouring,preservative ect. 

really your only option if you cant get to a doctor for tests is a food diary - you,ll see a pattern emerge within a few weeks.

good luck with this and i hope you feel better x  

and now im gonna listen to my own advice and get that food diary ready for in the morning lol :)

 

let us know how you get on, remember you are not alone, ask as many questions as you want, people will answer and try to help.

 

 

 

 

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Thank You. Yes, I have been putting off the food dairy as well... There wasn't any soy in the cereal... I drink coffee on a semi regular basis and don't have a problem and snack on almonds.... But maybe the combination of it all was too much for me? In any case I will take your suggestion and start a food diary! Thanks for your help and support. :)

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I call it a food journal.  You should keep record of small details.  Is it cross- contamination from an home made ingredient or utensils?  Where did you eat or prepare this food?  What are some of the preservitives of this food?  Pay particular attention to the top 8 allergens.  They are more complex protein chains that earned that spot on the list.

 

Next...  There are other illnesses that can have some of the exact same symptoms of Celiac.  (I have even seen my daughter, a Celiac, have the same gluten symptoms when she was suffering from Eosinophilic Esophagitus.)

 

Now on to my Eosinophilic Esophagitus rant, er information, of food journaling.  Once an eosinophil has been activated, it can remain active (damaging normal healthy tissue) for 12 days.  So don't rule out a link to a food "trigger" from "should have been digested and out of my system from all that vomit/"D"..

 

You really need to be under the care of a doctor, ASAP.  There may come a day where the vomitting does not stop and you will have to be hospitalized for dehydration.  (trust me.  Testing is cheaper than covering a hospitalization for say 4 days of an I.V. ~ done that.  paid those bills for my daughter and that was while trying to get her diagnosed.) 

 

Your symptoms can even be from a hernia.  Nothing can fix that but surgery.

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General Mills Kix does not have a gluten free label.  It is most likely made on shared lines.  If General Mills says gluten free it should be safe but if not labeled so you should assume there are contamination issues.  This is the same for all items purchased.

 

Colleen

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I'm very much like you with some of my symptoms and frustrations.  Mine started back in August of 2012 with the trips to the ER.  Before that whenever I would eat I would always get a pain in the top of my left shoulder and always have horrible "indigestion" and feeling like I had a lump in my throat.  First trip to ER dinner was pizza, second trip dinner was spaghetti, third trip breakfast was oatmeal.   Everytime I would feel sick with a bloating, swelling pressure in my abdomen and my heart would be racing.  The last trip I made to my doctor before I finally started connected the dots I had eaten a turkey and swiss on wheat sandwich for lunch, by the time I got off work my face, neck, chest were flushed bright red and my stomach had the bloating, swollen feeling and my heart was racing.  She diagnosed me with esophageal spasm and put me on a calcium channel blocker to do double duty and treat the spasm and the rapid heart beat.  Several diagnosis I've had have been, GERD, anxiety, esophaegael spasm, and constipation.   I started doing my own research and came up with celiac disease and started putting pieces together and all my symptoms started making sense, since all of my symptoms seemed to be brought on after a meal.  On 2/04 my last trip to the doctor I presented classic dermatitis herpetiformis rash, bilateral rash on both elbows and both knees.  I was then referred to a dermatologist, but because I hated the sick feeling I also started a gluten free diet that day.  Needless to say by the time I had my appointment and my skin punch biopsy I had been gluten free for 3 weeks and of course the biopsy produced no answers because there was no IgA in the skin sample, which is what they look for in your blood and biopsy to diagnose celiac and dermatitis herpetiformis.  Today is exactly 1 month gluten free and my rash is faded by at least 50%, completely gone on my elbows and fading slowly on my knees and calf.  I am also struck with wanting a diagnosis, but with the knowledge of knowing the only way to get an accurate one is to reintroduce gluten to my diet.  I WILL NOT DO THAT!  I have lost 35lbs and feel much better on my diet.  It is frustrating spending an hour in the grocery store trying to find food, especially snack items.  Just remember fresh meat and fruits and vegetables.  My new snack is Blue Ridge Mount blue corn tortilla chips with Newman's Own Pineapple salsa.  I have also given up sugar, caffeine, fried foods, red meat, and nicotine in my initial search to eliminate causes to my symptoms.  My final elimation was the gluten and was my most successful attempt so far.  Always listen to what your body tells you and sometimes a self diagnosis is better than spending money on all these expensive tests when the only solution is eliminating gluten.  There is no treatment other than a gluten free diet for celiac.  If you go gluten free and this helps, stick with it.  I know I am.  Bless you and good luck on your journey.

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    • Hi everybody,  I have had symptoms of Celiac since mid pregnancy and they have gotten worse over the last 5 months post partum. I have constipation, periods stopped, extreme fatigue,  joint pain, weak muscles, dizzyness, migraines, light sensitivity,  pins and needles in hands and feet, elevated TSH, depreason and anxiety. Was put on thyroid meds but it didn't help any of my symptoms. My doctor told me to try gluten free and reintroduce it. I tried it for 2 weeks and started feeling quite a bit better, then reintroduced it and felt worse than ever! It's definitely a gluten problem. She suggested I get the Celiac panel run so I got tested for Ttg iga, DGP igg and EMA all came back NEGATIVE! by this point I had only reintroduced gluten for a few days. She said my antibodies shouldn't go down by much in this time frame. Should I push for a referral to a GI doctor? I don't know why I feel the need for diagnosis? Probably my mother in law laughing when I said I can't eat gluten anymore and she tried to offer me things like donuts, saying it's just a little.  She just doesn't get it. So now, do I suffer for 6 weeks to get the biopsy or just stop eating gluten and be done with it.  I have also noticed while introducing new foods to my baby that he throws up whenever I give him anything wheat based. I doubt they can diagnose a baby and I refuse to damage his intestines for a diagnosis.  Maybe I should get my daughter tested as well? She is 3 and has been complaining of upset tummy and is frequently constipated. She is growing well though but is also quite thin. She is not a big eater. She may be constipated because she holds it. She is afraid to poop on the potty. Since I have had symptoms for only about 10 months, could there not be much damage yet? Sorry for the long post! 
    • The best thing you can do is get to your regular doctor and have a celiac panel run. You might also ask to see an allergist. Be sure to keep eating gluten until all celiac related testing is done.
    • Sounds like you may be alleric to something in both products. Next time you are at the store compare the ingredients of each to see if they have one in common that you don't think you eat in other products..  It might be a good idea to schedule an appointment with your doctor for a referral to an alergist to be on the safe side.
    • I don't know if this will help while you are waiting on the endoscopy but figured it might so here goes... If your life permits you could try going to bed so you can get up a couple hours earlier. Then eat something shortly after you are up like Cream of Buckwheat or Cream of Rice, an egg or something else gluten-free. You don't have to have gluten at each meal while waiting for your testing to be finished and something gluten-free for breakfast may sit better. You can get your gluten at lunch or dinner. By getting up a couple hours earlier that may allow you system to 'clear' the D and relieve a bit of the anxiety.  Ask your doctor if you can take something like Immodium with the antidepressant. That may help your day be easier and lessen the D the next morning.
    • I'm wondering if anyone else has experienced this.  I have been eating toasted Udi's gluten free cinnamon raisin bread the last few mornings with either butter or almond butter.  This morning, right after eating it, I started having uncontrollable, violent fits of coughing and choking.  I was finally able to drink a lot of water, then I had a Ricola lozenge and took some ibuprofen, and my system finally calmed down.   I had this same experience several years ago after eating some gluten free Van's waffles.  Has this happened to anyone else?  I'm at a loss, as I've never reacted to butter or almond butter this way, and not to the ingredients listed on the Udi's package, unless I have an undiagnosed sensitivity to something.  This was scary, needless to say, I will be avoiding Udi's products. 
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