Looking For Any Help, Suggestions And Anything Else I Should Know

[bahrbdoll]

Hi everyone, I am new here and love all the information I have read. I'm not real sure how to do this, but I'd really like some input.. seriously anything at this point would make me feel better! This could be a book, but I will try to keep it a short story. I'm really confused about when this actally started vs. when I realized it. So, I will start where I Thought my problems began-

The end of last October, 5 months pregnant, one night I started having horrible stomach pains (had happened before-had also been to ER before for it-was written off as complications from previous gastic bypass surgery) getting hot then cold, throwing up-thought I was dying. Went to the ER, because of being PG they started with least invasive- After 2 days (almost literally dying) they fixed a major bowel obstruction. That was the begining or so I thought.....

10 months now w/ chronic diarrea- taking 3 meds for it (still don't eat for hours before having to leave home)

beyond gassy, painfull BM min. after eating, horrible smell, greasy looking

didn't gain weight while PG

anemia ( now supplementing)

fatigue

major hair loss ( told my hair cycle got off track w/ my surgery)

hypoglycemia (Before and after surgery- told because of gastric bypass years ago)

irratibility

malnutrition and malabsorption issues

mineral defficencies

daily headaches ( nothing helps and would come and go for hours at a time throughout day)

weak limbs, twitching muscles

no concentration, memory- basically oblivious to life

anxiety issues

only 2 menstral cycles now daughters 6 mo.

abnormal high liver enzymes

take prenatal vitamins, b12 supp, iron supp, folic acid supp, prilosec and ALOT of over the counter tummy meds

In my past..... car accident Dec '01

-chronic back pain since ( first horrible lower back)

-Gastric Bypass Oct '02 or '03 relieved alot of lower back pain

-mysteriously upper back, shoulders & neck muscles constantly tight and cramped up (described in medical chart like fibromyalgia)

-gall bladder removed

-lactose intollerant

-3 c-sections now

-chronic sinus problems ( 2 surgeries now)

-asthma since child

-seasonal allergies, mold, dust, cats

-treated for deppression since '01

So, this is what I have accomplished since my bowel obstruction surgery last october-

2 week follow up w/ surgeon checked for some bacterial poop issues told everything fine

within a month complaining to OB about chronic diarrea- told it will take a while for system to get back to normal

continued to complain- started loosing hair they found and treated for campylobacter

diarrea didn't get better litterally going over a dozen times per day not gaining weight while PG

after beautiful Darbie born in Feb Healthy dispite everything I was going through

Finally, now they could do more tests

- 2 NEG blood tests for celiacs

- upper and lower GI's -nothing

BUT -Big But - He couldn't biopsy the part of the small intestine they normally would because that is the part of my small intestine that is bypassed from when I had my gastric bypass surgery done.

So, I was put on a gluten free diet it's 2 months now, things seem to be slowly improving? lots of med changes too.

still finding gluten in crazy things been trying my best. So here are some of my questions...............

Please tell me what you think, Do I have celiacs or gluten intolerant?

what do I do next?

I would really like I diagnosis for my own piece of mind, what should I do now?

once you are gluten-free, if you aren't gluten sensitive/celiac, does your body kind of reject gluten if you eat it again?

once getting better, is it easier to tell what may have made you sick? how quick do you experience reaction?

how long does it last?

I would like info on the labs I have read about- what they can do, if Dr.'s accept results,anything else

who would be able to give me the most help-explain things (dr.'s, nutritionalists)???

What does the genetic thing tell you- do you have labs do it or dr.'s do it- what is it?

Sorry, for taking so much of your time. I would appreciate any responses, info, suggestions, help, anything!

P.S I just turned 36 incase that matters THANK YOU SO MUCH!

[Tracylew]

Hi everyone, I am new here and love all the information I have read. I'm not real sure how to do this, but I'd really like some input.. seriously anything at this point would make me feel better! This could be a book, but I will try to keep it a short story. I'm really confused about when this actally started vs. when I realized it. So, I will start where I Thought my problems began-

The end of last October, 5 months pregnant, one night I started having horrible stomach pains (had happened before-had also been to ER before for it-was written off as complications from previous gastic bypass surgery) getting hot then cold, throwing up-thought I was dying. Went to the ER, because of being PG they started with least invasive- After 2 days (almost literally dying) they fixed a major bowel obstruction. That was the begining or so I thought.....

10 months now w/ chronic diarrea- taking 3 meds for it (still don't eat for hours before having to leave home)

beyond gassy, painfull BM min. after eating, horrible smell, greasy looking

didn't gain weight while PG

anemia ( now supplementing)

fatigue

major hair loss ( told my hair cycle got off track w/ my surgery)

hypoglycemia (Before and after surgery- told because of gastric bypass years ago)

irratibility

malnutrition and malabsorption issues

mineral defficencies

daily headaches ( nothing helps and would come and go for hours at a time throughout day)

weak limbs, twitching muscles

no concentration, memory- basically oblivious to life

anxiety issues

only 2 menstral cycles now daughters 6 mo.

abnormal high liver enzymes

take prenatal vitamins, b12 supp, iron supp, folic acid supp, prilosec and ALOT of over the counter tummy meds

In my past..... car accident Dec '01

-chronic back pain since ( first horrible lower back)

-Gastric Bypass Oct '02 or '03 relieved alot of lower back pain

-mysteriously upper back, shoulders & neck muscles constantly tight and cramped up (described in medical chart like fibromyalgia)

-gall bladder removed

-lactose intollerant

-3 c-sections now

-chronic sinus problems ( 2 surgeries now)

-asthma since child

-seasonal allergies, mold, dust, cats

-treated for deppression since '01

So, this is what I have accomplished since my bowel obstruction surgery last october-

2 week follow up w/ surgeon checked for some bacterial poop issues told everything fine

within a month complaining to OB about chronic diarrea- told it will take a while for system to get back to normal

continued to complain- started loosing hair they found and treated for campylobacter

diarrea didn't get better litterally going over a dozen times per day not gaining weight while PG

after beautiful Darbie born in Feb Healthy dispite everything I was going through

Finally, now they could do more tests

- 2 NEG blood tests for celiacs

- upper and lower GI's -nothing

BUT -Big But - He couldn't biopsy the part of the small intestine they normally would because that is the part of my small intestine that is bypassed from when I had my gastric bypass surgery done.

So, I was put on a gluten free diet it's 2 months now, things seem to be slowly improving? lots of med changes too.

still finding gluten in crazy things been trying my best. So here are some of my questions...............

Please tell me what you think, Do I have celiacs or gluten intolerant?

what do I do next?

I would really like I diagnosis for my own piece of mind, what should I do now?

once you are gluten-free, if you aren't gluten sensitive/celiac, does your body kind of reject gluten if you eat it again?

once getting better, is it easier to tell what may have made you sick? how quick do you experience reaction?

how long does it last?

I would like info on the labs I have read about- what they can do, if Dr.'s accept results,anything else

who would be able to give me the most help-explain things (dr.'s, nutritionalists)???

What does the genetic thing tell you- do you have labs do it or dr.'s do it- what is it?

Sorry, for taking so much of your time. I would appreciate any responses, info, suggestions, help, anything!

P.S I just turned 36 incase that matters THANK YOU SO MUCH!

[Tracylew]

Hope you find your answers - sounds like you've been through the wringer. I've been frustrated in my search for answers to my health issues too and it isn't easy.

The hair loss, btw, probably is due to your pregnancy. Did it start falling out when your baby was about 4 months old or so? I lost a lot of hair with all three of my kids - good news! it comes back - LOL Then again, if you do indeed have celiac than hair loss may be one of the symptoms: I don't know about that one.

It sounds like you may have to keep on the gluten-free diet since the GI can't biopsy the part of the bowel he needed to. I know there are people in here who are happy just feeling good again and not worried about what the tests say.

Good luck to you!

Tracy

[bahrbdoll]

Hope you find your answers - sounds like you've been through the wringer. I've been frustrated in my search for answers to my health issues too and it isn't easy.

The hair loss, btw, probably is due to your pregnancy. Did it start falling out when your baby was about 4 months old or so? I lost a lot of hair with all three of my kids - good news! it comes back - LOL Then again, if you do indeed have celiac than hair loss may be one of the symptoms: I don't know about that one.

It sounds like you may have to keep on the gluten-free diet since the GI can't biopsy the part of the bowel he needed to. I know there are people in here who are happy just feeling good again and not worried about what the tests say.

Good luck to you!

Tracy

[bahrbdoll]

actually I started loosing my hair right after the obstructed bowel surgery, when everything went wrong

[The Fluffy Assassin]

...

BUT -Big But - He couldn't biopsy the part of the small intestine they normally would because that is the part of my small intestine that is bypassed from when I had my gastric bypass surgery done.

Edit: She's already responded, so there's no point in changing what I wrote immediately below but I wanted to add for anybody surfing in to the thread that I realized subsequently that my reply, uh, exceeded my competence. Please skip down to my post #8 for a (hopefully) better thought out reply.

What celiac disease is, essentially, is the inability of a certain portion of the small intestine to absorb nutrients. If the operation bypassed that part of the intestine, whether or not you were celiac before, your body isn't absorbing those nutrients and you're going to get all the worst effects of celiac disease. I am not a doctor; I freely admit to just being a random yoyo on the Internet. However, just from your description, it seems like the first thing you want to do is see if you can get the bypass reversed, immediately if possible. For a celiac, the gluten free diet reverses the damage, but if that segment of intestine is bypassed, a gluten free diet is about as useful as putting high-test in a car with no engine. Please seek a second opinion immediately. You can find competent GI doctors by searching the Doctors forum on this board with the name of your hometown. Best of luck to you.

[bahrbdoll]

What celiac disease is, essentially, is the inability of a certain portion of the small intestine to absorb nutrients. If the operation bypassed that part of the intestine, whether or not you were celiac before, your body isn't absorbing those nutrients and you're going to get all the worst effects of celiac disease. I am not a doctor; I freely admit to just being a random yoyo on the Internet. However, just from your description, it seems like the first thing you want to do is see if you can get the bypass reversed, immediately if possible. For a celiac, the gluten free diet reverses the damage, but if that segment of intestine is bypassed, a gluten free diet is about as useful as putting high-test in a car with no engine. Please seek a second opinion immediately. You can find competent GI doctors by searching the Doctors forum on this board with the name of your hometown. Best of luck to you.

thank you so much for replying- call it the blonde hair or whatever, could you please explain what you meant by the engine/high test thing- thanks again

[The Fluffy Assassin]

thank you so much for replying- call it the blonde hair or whatever, could you please explain what you meant by the engine/high test thing- thanks again

Sorry, I just hauled off and wrote what I was thinking, and probably got everything wrong anyway. As I said, I'm not a doctor and may have been talking totally out my behind. Here's the Mayo Clinic on gastric bypass: Open Original Shared Link

You're certainly right that they bypass the duodenum, which is indeed the part of the intestine that is biopsied to check for celiac disease. And they mention many of your symptoms, though I think these are expected to go away within a few months, which for you apparently they haven't.

Here's their suggested gastric bypass diet: Open Original Shared Link

I still don't see how a gluten-free diet could help, as it is normally helpful in repairing damage to the duodenum, which you've had bypassed. But maybe somebody better informed than me will turn up to clarify things better.

[AJ-nyc]

bahrbdoll,

i noticed you listed this symptom.....

-mysteriously upper back, shoulders & neck muscles constantly tight and cramped up (described in medical chart like fibromyalgia)

i had the exact same feelings in m upper back, shoulders and neck. the muscles were tight and cramped, and it felt exactly like fibromalgia. after i was diagnosed as being vitamin d deficent and was put on 50,000 iu 2x a week, these weird muscle pains went away instantly and haven't returned. hope you are not d deficient, but it's worth getting tested for !!!

[GFPamela]

I've found a number of articles that say there's a strong relationship between celiac disease and gallbladder disease (and some of your other past or present symptoms but especially this one). Do a search; you'll find some interesting stuff that may be helpful.