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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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    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)
       
    • Excellent point, GFinDC!!! I just assumed that Steph had the endoscopy and not just the antibodies tests.    
    • She (your PCP)  can order a celiac blood panel.  It might not be a complete panel, but it's a start.  Any medical doctor can order one.  A GI is needed for the endoscopy (ulcers, Celiac disease, h.pylori, etc.), HIDA scan (gallbladder)  or colonoscopy (IBS).   Since you just saw her, email/call/write a letter and ask her to order (lab) the celiac panel.  You could go to the lab before or after work.  Pretty easy!  
    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
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