Help - Am I A Celia Or Am I Going Mad?

[tillybean]

Hi everyone, i am a newbie so please be gentle with me!!!

i am a 35 year old female who is overweight.

previous history:

had my gallbladder removed a few years ago

am B12 deficient and have injections every 12 weeks into the muscle

have bad reflux and after an endoscopy am on lansoprazol which is an acid suppressant

from the endoscopy was diagnosed with inflammation of the oseophegus (sp)

have suffered with a tender stomach/rib area

have a lower back problem caused by a bus crash

have had giardias and helicobacteur pylori in the past

(i sound so unhealthy!!!!!)

for the past couple of years i have suffered quite badly with what i thought were stomach upsets. since may this year i have had almost constant diarrhoea and awful pains in and around my stomach. sometimes not long after i eat my tummy starts making very strange rumbling sounds and i then have D - and may go to the bathroom three or four times. other days i dont go at all.

i went to my doctors in june who did a stool sample to see if i had any bugs which came back as negative - although they only did one sample test - but they put me on some antibiotics "just in case".

things did not really improve. i felt awful - tired, lethargic, miserable, weepy plus still getting a combination of D and then constipation.

had blood tests done to rule out malaria (as i was in cambodia in january) which came back negative, but the test was positive for an elevated ERA (???) level which the doctor told me meant that i was fighting an infection.

had two more blood tests done over the next couple of months with the same elevated ERA plus they diagnosed that i was anemic (as well as already having a B12 deficiency) so they put me onto iron tablets.

the last blood test came back clear but the symptons were still there.

they sent me to a consultant at the hospital who wants to do an endoscopy and a procedure where they take samples from up your backside - sorry, dont remember the name. he asked me lots of questions and concentrated on whether or not i was irish as irish people are high risk for being a celiac.

i wondered if anyone had similar symptons as mine and/or suggestions of what else i can do? i am concerned about the apathy at the hospital - it took me three months for an initial appointment - and i am worried about what is wrong with me. is there anything that i should have told the consultant that i didnt? i forgot to mention about the pain around my ribs but he did examine me and noted that i was very tender.

thanks if you have read this far. i guess i am looking for others who may have had similar symptons to see if this is what is wrong with me.

Sam

edited to say that the title should say "am i a celiac" rather than "am i a celia"!!!!

[ravenwoodglass]

Hi everyone, i am a newbie so please be gentle with me!!!

i am a 35 year old female who is overweight.

previous history:

had my gallbladder removed a few years ago

am B12 deficient and have injections every 12 weeks into the muscle

have bad reflux and after an endoscopy am on lansoprazol which is an acid suppressant

from the endoscopy was diagnosed with inflammation of the oseophegus (sp)

have suffered with a tender stomach/rib area

have a lower back problem caused by a bus crash

have had giardias and helicobacteur pylori in the past

(i sound so unhealthy!!!!!)

for the past couple of years i have suffered quite badly with what i thought were stomach upsets.  since may this year i have had almost constant diarrhoea and awful pains in and around my stomach.  sometimes not long after i eat my tummy starts making very strange rumbling sounds and i then have D - and may go to the bathroom three or four times.  other days i dont go at all.

i went to my doctors in june who did a stool sample to see if i had any bugs which came back as negative - although they only did one sample test - but they put me on some antibiotics "just in case".

things did not really improve.  i felt awful - tired, lethargic, miserable, weepy plus still getting a combination of D and then constipation.

had blood tests done to rule out malaria (as i was in cambodia in january) which came back negative, but the test was positive for an elevated ERA (???) level which the doctor told me meant that i was fighting an infection.

had two more blood tests done over the next couple of months with the same elevated ERA plus they diagnosed that i was anemic (as well as already having a B12 deficiency) so they put me onto iron tablets.

the last blood test came back clear but the symptons were still there.

they sent me to a consultant at the hospital who wants to do an endoscopy and a procedure where they take samples from up your backside - sorry, dont remember the name.  he asked me lots of questions and concentrated on whether or not i was irish as irish people are high risk for being a celiac.

i wondered if anyone had similar symptons as mine and/or suggestions of what else i can do?  i am concerned about the apathy at the hospital - it took me three months for an initial appointment - and i am worried about what is wrong with me.  is there anything that i should have told the consultant that i didnt?  i forgot to mention about the pain around my ribs but he did examine me and noted that i was very tender.

thanks if you have read this far.  i guess i am looking for others who may have had similar symptons to see if this is what is wrong with me.

Sam

edited to say that the title should say "am i a celiac" rather than "am i a celia"!!!!

<{POST_SNAPBACK}>

It sounds likely that you are. Your symptoms sound very familiar. I'm glad your doctor is looking into it. Be sure to give the diet a try even if tests come back negative.

[nettiebeads]

Of course we'll be gentle!!! We all know the pain(s) you are going through. I think celiac disease is a definate possibility. Ask for the blood test for the celiac disease panel - that might help rule celiac disease in, but won't rule it out, but at least it's non-invasive. After all you've been through a blood draw would be so very simple. And as for being put on an antibiotic just in case is ridiculous!! Guess what one of the side affects are of antibiotics - diarrhea! Sheesh! And I'm sorry to hear you experiencing the unfortunate apathy that seems to abound in the medical community. To me, that's next to criminal! Have you tried the gluten-free diet? After your next round of appts, why don't you try the gluten-free diet, at least for a couple of weeks to see if you feel better. It is a valid dx tool, called the diet challenge. That's how my gp dx'd me 9 years ago. Hope you find your answer soon so you can start getting better!

[EvilGut]

Sam,

Have you been retested for heliobacter? The upper GI problems (reflux, stomach pain), the B12 deficiency and anemia could all be related to H. pylori gastritis. I'm thinking this could be my problem too. I'm undiagnosed but have many of the same symptoms you do. Many years ago, I was found to be infected with H. pylori, and the doctor chose not to treat it--they didn't back then. The treatment is very aggressive--only tough bugs can grow in stomach acid, after all--multiple antibiotics. If you didn't receive this treatment, you may want to. And if you did, you may want to make sure it worked.

Good luck.

[floridanative]

Hi Sam - welcome to the board. I'm no expert about celiac disease but I have read up on intensely in the past few weeks as my GI doc told me he suspects I have it. He also told me it was more common for people with Scottish ancestry. Seems every doc has their own ethnic group they attach to celiac disease but recent research shows that now even some people from Asia and India are being diagnosed with it. No doubt they are in this country now and eating our diet. In any case, don't let your doc tell you that you don't have something based on your ancestry because what he thinks is correct just isn't - anymore at least.

You will find so much help on this board it is amazing. The 'experts' on here (some are teens) know much more than any of the docs I've seen. I have learned a very important lesson through my search for my health problems - no one cares about my health as much as I do. And like my Mother says 'Doctors are practicing medicine and we are their guinea pigs'.

Good luck getting better!

Tiffany M.

[tillybean]

Hi Sam - welcome to the board. I'm no expert about celiac disease but I have read up on intensely in the past few weeks as my GI doc told me he suspects I have it. He also told me it was more common for people with Scottish ancestry. Seems every doc has their own ethnic group they attach to celiac disease but recent research shows that now even some people from Asia and India are being diagnosed with it. No doubt they are in this country now and eating our diet. In any case, don't let your doc tell you that you don't have something based on your ancestry because what he thinks is correct just isn't - anymore at least.

You will find so much help on this board it is amazing. The 'experts' on here (some are teens) know much more than any of the docs I've seen. I have learned a very important lesson through my search for my health problems - no one cares about my health as much as I do. And like my Mother says 'Doctors are practicing medicine and we are their guinea pigs'.     

Good luck getting better!

Tiffany M.

<{POST_SNAPBACK}>

[tillybean]

thanks to everyone for coming back to me.

i did get treatment for helicobacteur pylori EvilGut but it did not do anything. when i had it before and they gave me drugs for it it cleared up.

i finally have my appointment for my endoscopy - 20 December. a nice christmas present.

i am so keen to try a gluten-free diet but i dont want it to interfere with my results of the endoscopy so have to wait until after 20 December.

this site is amazing and i feel that the support and "love" is great. just what we all need. its also full of information - much more informative than my own doctor.

someone posted a link to a site to check the main symptons of possibly being a celiac and i was suprised to find that i ticked around 80% of them - in particular odd ones that i had not thought of such as decreased ability to clot blood and very dry skin. i also read an article on the same site which discussed a physician having a patient who was obese and had celiac. i always thought that having celiac was only for skinny minxs but this is not the case.

thanks again for your support. will try to hang on in there until 20 December.

[Rusla]

thanks to everyone for coming back to me.

i did get treatment for helicobacteur pylori EvilGut but it did not do anything.  when i had it before and they gave me drugs for it it cleared up.

i finally have my appointment for my endoscopy - 20 December.  a nice christmas present.

i am so keen to try a gluten-free diet but i dont want it to interfere with my results of the endoscopy so have to wait until after 20 December.

this site is amazing and i feel that the support and "love" is great.  just what we all need.  its also full of information - much more informative than my own doctor.

someone posted a link to a site to check the main symptons of possibly being a celiac and i was suprised to find that i ticked around 80% of them - in particular odd ones that i had not thought of such as decreased ability to clot blood and very dry skin.  i also read an article on the same site which discussed a physician having a patient who was obese and had celiac.  i always thought that having celiac was only for skinny minxs but this is not the case.

thanks again for your support.  will try to hang on in there until 20 December.

<{POST_SNAPBACK}>

Your symptoms and my symptoms are very much alike except I have a whole pile of others including extreme tooth loss and decay etc. I get my results tomorrow and I worry that I didn't have enough gluten before the test. A friend of mine who I am positive has Celiac just had the test went gluten free three days before the test and it came back negative. I at least ate some gluten on the day of the test.

Good luck on your endoscopy, I do know it is a coouple of months in the future. Around here to get anything done or see a specialist is more like 18 + months in the future..

Rusla

[darkangel]

And as for being put on an antibiotic just in case is ridiculous!! Guess what one of the side affects are of antibiotics - diarrhea!  Sheesh! 

<{POST_SNAPBACK}>

That's what I'm saying. Insane.

I had a GP put me on Biaxin for a flu-like illness. And me with years history of IBS. Biaxin is one of the worst antibiotics you can give anyone with digestive issues. What are doctors thinking?

I've been thru six different GIs and none of them have ever tested me for celiac disease. Go figure.

[Rusla]

That's what I'm saying. Insane.

I had a GP put me on Biaxin for a flu-like illness. And me with years history of IBS. Biaxin is one of the worst antibiotics you can give anyone with digestive issues. What are doctors thinking?

I've been thru six different GIs and none of them have ever tested me for celiac disease. Go figure.

<{POST_SNAPBACK}>

I hate to say this but I don't think many doctors think. The only ones who seem to be thinking around here are my dentists. I find the GI's I have dealt with around here are insolent, egotistical self-centered jerks. They hate anyone who does research and ask you when you got your medical license. The thing is they say more than 80% of doctors finish last in their class or the majority finish near the bottom. I think I have seen most of that majority in Alberta.

[nccharm1972]

I have a question. I'm planning to go through self-diagnosis and determine if I have Celiac or not. I was originally told I was insulin resistant after dealing with infertility for almost 3 years now. I've been put on Glucaphage and altered my diet to cut out most carbs, but my stomach problems persist....and I'm still not able to get pregnant.

I also have hair loss, diarrhea, fatigue, infertility, PCOS (possibly), and I get these bumps on my chin. They start out under the skin as red and very sore places and then they end up turning into sores and leaving scars on my chin. Once I'm finally getting rid of one bump and it is healing, another one comes up somewhere near it. I also have some dark patches of skin on my neck and under my arms. A dermatologists said it was some kind of fungus and put me on monocycline. It did help, but that, in turn caused me to have excessive yeast infections and now yeast in my bowel. UGH! I can't win for losing!

Anyway...I'm trying to figure out if I even HAVE Celiac Disease....and I'm not sure what I can and can't eat if I do have it. I mean, how do I grocery shop? How do I eat out? HELP! Are there any websites with listings of fast food or grocery items that I can get that are gluten free?

Linda

[nettiebeads]

The hair loss, fatigue, diarrhea, and possibly dh makes me suspect celiac disease. Or at least gluten problems. My mother is diabetic and doesn't have the stomach problems you describe, although both diabetes and celiac disease are autoimmune disorders and it's possible to have both.

The first part of the gluten-free diet seems easy, but it's complicated. No gluten. Eliminate wheat, rye, oat, and barley. That also means spelt, triticale, and a couple of other grains that sound wheat free, but contain gluten. No beer. No malt, malt flavorings. But what you get in return is an education in how over processed commercial foods are. Go with things as close to natural as possible. I'm sure Katie will come in and let you know about her links to lists that will help a lot. It's a doable diet, at first it's overwhelming, but after awhile, it'll be second nature and just a way of life. Promise.

When do you think you'll try the diet? It may take a few weeks to months to feel improvement, but hang in there.

[WRowland]

Great info on the on-line websites. Get one of the great books on the subject.

I know that "Going Against the Grain" has a discussion about insulin insensitivity and PCOS that would be helpful. It keeps me returning to the fruits and veggies and not just substituting one poor nutrient grain for another.

Check out Dr. Mercola's website and his extensive info on PCOS, and can't recommend www.nutritiondata.com enough. It's free and it's being my best coach in the transition. Start with the ND Quick Start in the upper left hand corner and go from there. This is a hard switch for all of us. We need facts without judgement. It's so easy to get half results because we didn't know enough. PCOS especially needs a diet reconstruction that emphasises excellent nutrient all around, not just gluten-free.

Keep coming back, lot's of help and love here.