Help Me Please

[atown159]

Hi my name is Allen and I've been sick and miserable for the last 2 1/2 half months. It all started when one morning I ate panda express and then had a Latte from a local coffee shop. The moment I started drinking that Latte I felt so sick with nausea and burning upper abdominal pain. I fought out the pain and the nausea eventually subsided to where It was manageable. I felt a little better than evening and decided to play basketball and it all came back so quick. I went home thinking I had a flu or something else and just had Saltines and drank Ginger Ale for like a week. That week was hell because I couldn't eat anything and always felt nauseated from anything. Even water didn't make me feel good and I was always left with a burning aching pain in my upper abdominal region. This is all during my first year of college and I could barely go to school some days. I was finally able to start eating again about 2 weeks after the "latte" drink that has left me sick since. But no matter what I ate, it would make me feel nauseated and dizzy. After about a month of hell I finally started getting a hold of my symptoms a little better. I started taking ginger which helped the nausea a lot. I ate a little healthier more veggies and such but I never completely felt better. I never really had a problem with my bowel movements. From about the 15th of october to the 15th of november I started feeling better and better. I ate a lot of raw veggies and fresh foods. THEN ALL OF A SUDDEN around november 16th i started getting constant lower abdominal pain and lower back pain on top of all the other symptoms after coming off of a cold. I'm at a complete loss now. I went to the er 3 times ( one was for a collapsed lung that i've suffered from before) The other two times they just ran the usual tests and said everything was normal ( CT Blood xrays etc) I also had a barium swallow test which showed I had reflux. I'm going to see a GI specialist very soon. I'm so lost

Here are my symptoms:

Upper abdominal burning pain (usually happens after eating certain foods)

Nausea ( On and Off but usually occurs every day)

Headaches ( One times was very severe after I ate oatmeal cookies)

Abdominal bloating

Abdominal Pain after having a bowel movement

Lower back pain

Floating Stool even if i don't eat that much fiber

Tingling feeling at tips of hands and feet

Very fatigued after eating

Sometimes i get full really quickly

Lower abdominal pain/back pain while sitting.

I just want to be a normal kid again:( Can gluten REALLY CAUSE SUCH SEVERE SYMPTOMS?

[Booghead]

Oh yes sir gluten can really cause severe symptoms. Honey gluten can cause stomach cancer! Many of your symptoms are very similar to mine and the burning in upper abdomin.Goodness that stuff sucks. Like heart burn but lower... Strange indeed. Make sure they run the correct Celiacs panel when they take your blood. I am 17 and I would like to be normal too, but gluten free isn't so bad. Its actually kinda nice. There are people with much worse symptoms then yours. Don't let them talk you into a Colonoscopy until they rule out Celiacs. I had one and its the worse thing! Good Luck

[gfpirate]

YES YES AND YES!!!! It's amazing how evil gluten can be.

Your symptoms are quite similar to what mine were, though every case is different.

My advice to you would be to adopt the gluten-free diet for about a month or so... and I mean cold turkey, no gluten whatsoever. If you feel better, then there ya go, case closed. If not, I would reccomment seeing a GI, which you said you would do.

gluten-free Safe foods include:

Fruits&vegetables with ranch dip (read ranch ingredients)

Nuts (check label to be sure that they aren't processed on shared equipment)

Udi's gluten-free sandwich bread (I use mine with turkey, mayo, and avacado)

Breadless wraps- Ex: salami wrapped with pepper jack cheese, mayo, and lettuce

Lay's potato chips- regular, barbeque, sour cream and onion, salt and vinegar

Ruffles Chips- regular, cheddar, BBQ

Spinach dip (with gluten-free bread)

Salad (No croutons, be aware of dressing ingredients)

Scrambled eggs with cheese/tobasco sauce

Rotisserie chicken

Hershey's chocolate bars

Snickers Bars

Milky Way- DARK CHOCOLATE VERSION ONLY

Starbursts

Swedish Fish

Milk duds

Chex cereals (cinnamon, chocolate, honey, and rice)

Tostitos Tortilla chips and salsa

Chick Fil A waffle fries

Wendy's Baked Potato

Taco Bell Tostada

Nachos (with no meat, unless you know what's in it)

ALWAYS ALWAYS ALWAYS check ingredients before eating anything. Soon, you will grow accustomed to it and it will be like a second nature. Don't be shy to ask about gluten-free options at restaurants. I hope this helps, and I hope you get your case resolved!

[Skylark]

I just want to be a normal kid again:( Can gluten REALLY CAUSE SUCH SEVERE SYMPTOMS?

Yes, it can.

Gfpirate has given you some bad advice. You need to keep eating gluten until you have your celiac testing done. The celiac tests all rely on finding the antibodies and damage that gluten causes. If you go gluten-free right now you will never get a firm diagnosis. Celiac is an autoimmune disease and it puts you at risk for further autoimmunity, plus you can pass it on to children so you need to find out if you have it.

Once you have your blood test and possibly a biopsy done, you can try the diet even if the tests are negative. The celiac tests come up false negative a lot, plus there is non-celiac gluten intolerance that can make you very sick. There are no tests for gluten intolerance other than trying the diet strictly for 3-4 months.

Do NOT start out eating junk food like gfpirate has listed until you are feeling a lot better. The chemicals, food colors, preservatives, and inevitable small amounts of cross-contamination will slow down your healing. You want to eat healthy, whole, naturally gluten-free foods like meat, fish, nuts, eggs, vegetables, fruit, potatoes, and rice. Stay off dairy for the first couple months because the damage from gluten makes dairy hard to digest.

[AVR1962]

Hi my name is Allen and I've been sick and miserable for the last 2 1/2 half months. It all started when one morning I ate panda express and then had a Latte from a local coffee shop. The moment I started drinking that Latte I felt so sick with nausea and burning upper abdominal pain. I fought out the pain and the nausea eventually subsided to where It was manageable. I felt a little better than evening and decided to play basketball and it all came back so quick. I went home thinking I had a flu or something else and just had Saltines and drank Ginger Ale for like a week. That week was hell because I couldn't eat anything and always felt nauseated from anything. Even water didn't make me feel good and I was always left with a burning aching pain in my upper abdominal region. This is all during my first year of college and I could barely go to school some days. I was finally able to start eating again about 2 weeks after the "latte" drink that has left me sick since. But no matter what I ate, it would make me feel nauseated and dizzy. After about a month of hell I finally started getting a hold of my symptoms a little better. I started taking ginger which helped the nausea a lot. I ate a little healthier more veggies and such but I never completely felt better. I never really had a problem with my bowel movements. From about the 15th of october to the 15th of november I started feeling better and better. I ate a lot of raw veggies and fresh foods. THEN ALL OF A SUDDEN around november 16th i started getting constant lower abdominal pain and lower back pain on top of all the other symptoms after coming off of a cold. I'm at a complete loss now. I went to the er 3 times ( one was for a collapsed lung that i've suffered from before) The other two times they just ran the usual tests and said everything was normal ( CT Blood xrays etc) I also had a barium swallow test which showed I had reflux. I'm going to see a GI specialist very soon. I'm so lost

Here are my symptoms:

Upper abdominal burning pain (usually happens after eating certain foods)

Nausea ( On and Off but usually occurs every day)

Headaches ( One times was very severe after I ate oatmeal cookies)

Abdominal bloating

Abdominal Pain after having a bowel movement

Lower back pain

Floating Stool even if i don't eat that much fiber

Tingling feeling at tips of hands and feet

Very fatigued after eating

Sometimes i get full really quickly

Lower abdominal pain/back pain while sitting.

I just want to be a normal kid again:( Can gluten REALLY CAUSE SUCH SEVERE SYMPTOMS?

When you speak to your GI mention to him/her what you did here. Let them know you are questioning gluten. They are going to more than likely want to run some tests. If you can mange the tests you will need to saty on gluten. However, realize that the testing is not real dependable so while the tests say you are negative for celiac, you may test a year later and the tests will be positive. Also, you could be intolerant of gluten without being celiac. It does sound to me like you are onto to something here. I would definately at least try to get this documented in your medical records. If you do not get the results form your GI like you are hoping for you can go on your own with a gluten-free diet. However, just by what you have posted here I think I would go off the dairy.

[gfpirate]

Yes, it can.

Gfpirate has given you some bad advice. You need to keep eating gluten until you have your celiac testing done. The celiac tests all rely on finding the antibodies and damage that gluten causes. If you go gluten-free right now you will never get a firm diagnosis. Celiac is an autoimmune disease and it puts you at risk for further autoimmunity, plus you can pass it on to children so you need to find out if you have it.

Once you have your blood test and possibly a biopsy done, you can try the diet even if the tests are negative. The celiac tests come up false negative a lot, plus there is non-celiac gluten intolerance that can make you very sick. There are no tests for gluten intolerance other than trying the diet strictly for 3-4 months.

Do NOT start out eating junk food like gfpirate has listed until you are feeling a lot better. The chemicals, food colors, preservatives, and inevitable small amounts of cross-contamination will slow down your healing. You want to eat healthy, whole, naturally gluten-free foods like meat, fish, nuts, eggs, vegetables, fruit, potatoes, and rice. Stay off dairy for the first couple months because the damage from gluten makes dairy hard to digest.

I am genuinely sorry for the 'bad' advice (though I wouldn't exactly call it bad). I just figured you probably don't want to keep eating gluten if that is what's making you miserable. It's hard to just stop eating 'normal' food cold turkey and go to a super healthy diet, those were just gluten-free options to keep in mind if you are craving something that you used to be able to eat. I know that as soon as I was diagnosed, I was sick of eating salad after salad. And not all of the options I posted are unhealthy... scrambled eggs with some tobasco are delicous, healthy, and gluten-free.

Anyways, the best thing you can do for yourself is talk to a doctor, and trying out the diet never hurt anyone. (And yes, your doctor may order a gluten 'binge' for a few weeks before a biopsy, that is what mine did).

[Skylark]

I am genuinely sorry for the 'bad' advice (though I wouldn't exactly call it bad). I just figured you probably don't want to keep eating gluten if that is what's making you miserable. It's hard to just stop eating 'normal' food cold turkey and go to a super healthy diet, those were just gluten-free options to keep in mind if you are craving something that you used to be able to eat. I know that as soon as I was diagnosed, I was sick of eating salad after salad. And not all of the options I posted are unhealthy... scrambled eggs with some tobasco are delicous, healthy, and gluten-free.

Anyways, the best thing you can do for yourself is talk to a doctor, and trying out the diet never hurt anyone. (And yes, your doctor may order a gluten 'binge' for a few weeks before a biopsy, that is what mine did).

Yes, scrambled eggs are great.

Trying out the diet is fine, but as you learned it gets in the way of testing. I think everyone with stomach or neurological trouble should try gluten-free after they've been tested for celiac.

I agree there is a bit of a panic when you realize all your normal foods are off-limits but it's a GREAT time to build new, healthy eating habits. With celiac disease you have deficiencies, malabsorption, damage, and often feel ill. Sweets, fast food, and starchy gluten-free substitute don't provide nearly as much nutrition as whole foods with lots of fruit and veggies. Once you've healed and are feeling well, you can branch out into more processed foods and see how you tolerate them.

[atown159]

You guys are all awesome! I'm so thankful for this forum! I went to a gi and they r gonna run a celiac panel which I heard is not always very accurate. I just had some other questions too.

Can I be the only one with celiac in my family?

Can gluten intolerance be very very severe as well?

[gfpirate]

Celiac does tend to run in families, but that doesn't always mean everyone will have it. So yes, you could essentially be the only one in your family with Celiac (I am).

Yes, gluten intolerance can be so severe, even the slightest crumbs/cross contamination can trigger symptoms.

Just be very careful with what you eat! And when in doubt, DON'T eat it... always checking labels is a hassle at first, but it soon becomes second nature. Watch out for things like 'malted barley flour' 'barley' and 'malt vinegar', as these are all glutenous.

[Skylark]

Can I be the only one with celiac in my family?

Can gluten intolerance be very very severe as well?

Yes, and yes.

[AVR1962]

You guys are all awesome! I'm so thankful for this forum! I went to a gi and they r gonna run a celiac panel which I heard is not always very accurate. I just had some other questions too.

Can I be the only one with celiac in my family?

Can gluten intolerance be very very severe as well?

Celiac is a crazy thing, not only is it sneaky and hard to test for, it is my understanding that it can exist in the body in a dormant-like state so while you may think you are the only one in your family that has it, it is more than likely that other family members have it too. Sometimes testing for this is more difficult but there is genteic testing that cna be done. Several of my faily members have a gluten intoleance, some more so than others. I am the only one with a diagnosis of celiac. What is starnge about this though, is I knew the other family members had issues but I was the one who thought I had escaped it, I had a cast iron stomach. Now look at who is the most sensative of us all. Had my pain threshold been higher and I could not relate to what was going on? I don't know. What I do know about myself vs other family mebers who have an intolernece is I have alot more health issues that are not solely related to the intake of glutens.