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I Want To Rip Out My Intestines

melmak5

By melmak5
in Coping with Celiac Disease

Recommended Posts

melmak5 Contributor
melmak5
Posted

Every time I think I have "figured out" what's wrong with my body, something else goes wrong.

-acid reflux

-celiac disease

-bacterial overgrowth (2 rounds of antibiotics)

-processed foods

-pineapple, figs, bananas, fresh fruit in general = mouth allergic reaction

-rice sensitivity (for lack of a better term)

I have been sick since April and things are not getting better, they are getting worse.

Stuff I ate a week or two prior all of a sudden I cannot eat.

1. I am running out of foods I can eat and not react to, right now no matter what it is, it causes abdominal pain

2. I don't know how much more fight I have for trying to convince doctors that I am not "crazy" or "dramatic."

I have been gluten free since mid-June

Dairy, caffeine free for a month

Corn, soy, nut, fresh fruit, peanuts, shellfish, processed foods free for two weeks

Rice free for 5 days (first few days I felt better, now I'm back to bloating/pain/pressure/distention and exhaustion)

I keep an intake/output/pain diary.

I have been on 2 types of probiotics.

I go to an acupuncturist.

I drink 64-90 oz of water daily.

I am not in enough pain to warrant another trip to the ER, because they will just send me home with more digestive muscle relaxants and say "maybe you have a touch of IBS."

I only feel "ok" when I do not eat.

What gives?

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jmd3 Contributor
jmd3
Posted

I still have my bad days, but I was like you for a long, long time. I still have set backs, and I think it is because I am still learning.

I eliminated one type of probiotic that I was taking, and I got to feeling better. It did say it was free of all gluten, corn, dairy, soy, etc.... but since I stopped taking it, so much better. I am just taking the first probiotic I started with - Flora jen 3 - really like it alot! It says it is like eating 10 yogurts a day.

DingoGirl Enthusiast
DingoGirl
Posted

Sorry you're feeling so crummy.

This sounds like many of our friends on this thread who were ultimately diagnosed with Lyme disease.....what happened in April? I notice you live in MA - a huge area for Lyme......

just a thought.

Mom23boys Contributor
Mom23boys
Posted
-pineapple, figs, bananas, fresh fruit in general = mouth allergic reaction

Have you been to an allergist for this one?? Mouth reactions are often a sign of a cross reactive allergy with outdoor plants. Off the top of my head melons reactions come from ragweed allergy. I don't recall the others right off. Getting treated for the outdoor items (allergy shots) would decrease or even eliminate the mouth reaction. It may be worth looking into.

Janeti Apprentice
Janeti
Posted

I know this is going to sound crazy, but through the months when my gut was and is deciding what I can tolerate, well the times when my whole belly area is uncomfortable, I put a heating pad on low, and it seems to soothe it a bit. I hope this helps a little in the meantime. Janet

Ginsou Explorer
Ginsou
Posted

You must be terribly frustrated going through your present medical problems.

Have you had any food allergy tests done? I think perhaps the scratch tests may be more accurate than the blood tests.

Have you been tested for casein or lactose intolerance? (Dairy free does not mean casein or lactose free).

Is it possible for you to get an appointment with the Lahey Clinic? Many years ago a co-worker had some serious digestive problems, and he was seen at the Lahey Clinic, and he was found to be allergic to fresh fruit.

Could the rash be some type of shingles outbreak? My son once was covered from head to toe with an itchy rash....it was called "Fifth Disease", and lasted about 10 days, and never returned. It sounds like your recurring rash is allergy related.

Keeping a food diary is a great idea.....that is what I also did. Over a period of 3 months, there were only 3 days that I was pain free. At that time I had no idea that I had a gluten problem....until I went gluten free and had tests done.

I know what you mean about the ER and being told it might be IBS and being given muscle relaxants. They didn't work for me, either!

Some serious detective work needs to be done......and if your present GI is not able to figure it out, a change of doctors may be in order.

I was lucky......my "new" doctor was lactose intolerant herself, and another doctor at the same practice was a celiac.

Let's hope you can get to the root of the problem.

JNBunnie1 Community Regular
JNBunnie1
Posted

You know, the way you keep getting more and more reactions to foods that were 'ok' before sounds like you have leaky gut syndrome to me, I'd google that. Course, I'm no expert, you could have a parasite or something.

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Guest thatchickali
Guest thatchickali
Posted

Are you getting enough calories per day?

I found out I am malnourished and my doctor told me to eat more calories and keep track of them. I was shocked when I tracked a normal day, 400-700 calories.

That's ridiculously low, and now I've heard that people with malnutrition feel like me and getting back to a normal mutrition level makes them feel so much better.

I know your frustration.

melmak5 Contributor
melmak5
Posted
  • Author

Thank you all.

I guess I wasn't being overly dramatic yesterday, soon after I posted this I landed in the ER because I was unable to walk straight and got very dizzy.

6.5 hours later and they said I have "perfect" blood, electrolytes are fine, no infections all major organs fine.

They have no idea what is wrong and surprise surprise pushed narcotics.

They admitted that they didn

melmak5 Contributor
melmak5
Posted
  • Author

Thatchickali - you are right, I am probably not. The problem is that with the exception of applesauce, pickles and sourcraut I have been regurgitating almost everything I eat.

Dingogirl - I live in the city, so I don't think lyme is a possibility, but I haven't been tested for it and its definitely worth me asking about.

jmd3 - i had to cut out the priobitiocs all together for the past few days. They have made me so nauseous.

Ginsou - yes, both lactose and casein I have avoided. I had chicken pox really bad as a kid, and these bumps have gone down within 24-48 hours, so I am pretty sure they were hives. Lahey is not an option for me right now, but I can check with my insurance.

So the ER called both the GI and my primary and said that I had to be seen sooner and I called to follow up today and they insist they are booked and cannot see me for three weeks.

I feel like I am loosing some of my ability to fight.

CarlaB Enthusiast
CarlaB
Posted
Dingogirl - I live in the city, so I don't think lyme is a possibility, but I haven't been tested for it and its definitely worth me asking about.

I'm a city girl in a non-endemic area and I have Lyme! Over 50% don't even remember a tick bite.

Please look at the Lyme Disease Thread in this forum for testing information -- Open Original Shared Link. Doctors are very hesitant to diagnose Lyme Disease and use inadequate testing. Even in the face of a positive test, I still got a "Somatization Disorder" diagnosis.

Susie is right, you sound like us. And with treatment, my food sensitivities are almost totally gone.

With the exception of the Lyme test, EVERY test they ever ran on my was negative ... I was the healthiest sick person in the world!

melmak5 Contributor
melmak5
Posted
  • Author

Carla and Sussie - Thank you so much. I guess I never ever thought about it.

Sussie - what forms of testing you have done? (did you go through any false negatives?)

Thanks, I will definitely bring this up with both doctors on Tuesday.

AndreaB Contributor
AndreaB
Posted

I would definately look into lyme. You could have problems with metals, parasites, fungi. I don't really know that main line doctors acknowledge leaky gut. It is caused by something, so if they do acknowledge it they probably won't look for the cause.

Maybe you could go to an LLMD. That way you could be tested for a lot of different things to try and get to an answer.

melmak5 Contributor
melmak5
Posted
  • Author

Thank you guys, I have some hope again that this thing is going to get tackled and figured out. (I was loosing my steam the past few days, but after getting a migraine last night and sleeping 13 hours, I am starting to feel a bit better.)

I really appreciate your support and brains on this one.

I cannot wait to nail down whatever this is and then kick its ass.

DingoGirl Enthusiast
DingoGirl
Posted

Morning - -

Saw a report about this boy on Good Morning America yesterday - he is down to just six foods - check this out!

Open Original Shared Link

melmak5 Contributor
melmak5
Posted
  • Author

It is a great article!

My boss sent it to me and said "it made me think of you!"

Which is sad and sick that she knows I am down to apple sauce, pickles and turkey, but damn if I don't have the urge to travel to London!

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