Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Finally Got The Scope Results

num1habsfan

Recommended Posts

num1habsfan Rising Star
num1habsfan
Posted

Hey everyone. sorry I didnt post in a while(assumin someone noticed me missing). was busy then upset to a point I didnt wanna talk to anyone. some of you got the detailed email, the rest of you get the short version. here it goes:

I was fed up waitin for test results, so got appt here in town on friday...Im still so upset...Instead of testing me for what else I have, all the scopes in Saskatoon and Calgary were all only for Celiac. :( guess my family doc only wanted to prove I dont have it (but I do!! And have for the last 4 1/2 yrs almost). This was NOT what we had discussed: he was who said I likely have one of the other stomach diseases.

he SWORE even tho Ive been on diet 4 yrs, somethin would show on biopsies/bloodwork(which we all know isnt true)..

he said its all in my head(to the point he wanted to send me to psychiatrist, I said no!), that its "just IBS", and I gotta live like this forever. He refuses to send me elsewhere because he "sees no point"..and he strongly suggested i should quit the diet immediately :o . I was tempted to tell him "I'll quit if you pay for my funeral" :angry:

I wish i had money to go to US..need to find some way to prove them wrong..I'm actually gonna go to the local gov't office to get that phone # again and call the health dept to see if I can raise a big issue.

I'm terrified :( ..knowing something's wrong and out of options. Im still gettin worse..to the point where I feel like someone took a blow torch, lit my side on fire, and left it on.

My cousin said his wife is having lots of issues too and nobody can figure it out/they dont care/wont listen, so she does self-diagnosis. I think i may start that too..

now i dont know who will fill out the info for the U of R(need documentation from a doc about what I have/what services I need so i can register w/the disability department)

Any comments my friends, or suggestions...or hugs. I need them...

~ Lisa ~

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Lisa, I am so sorry this happened. I know how hopeful you were before you went on that trip. Is it possible for you to switch doctors? That one is obviously an ignorant jerk.

Can you afford to see a naturopathic doctor? That might be an option for you.

Have you ever been tested for Lyme disease? I know that here in Canada doctors are even more ignorant on that than celiac disease.

AndreaB Contributor
AndreaB
Posted

Lisa,

I would strongly suggest you search out an LLMD or at the very least a holistic/naturopath doctor.

A good LLMD will test for many things.....not just lyme. Any lyme test you have done needs to be done through Igenex. With you feeling so poorly, something else is going on. If your scopes are clean it's just one more test that is ruled out.

You can pm lymetoo on this board and tell her where you live and see if she knows of a good doctor.

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Lisa,

I would strongly suggest you search out an LLMD or at the very least a holistic/naturopath doctor.

A good LLMD will test for many things.....not just lyme. Any lyme test you have done needs to be done through Igenex. With you feeling so poorly, something else is going on. If your scopes are clean it's just one more test that is ruled out.

You can pm lymetoo on this board and tell her where you live and see if she knows of a good doctor.

The thing is that they werent supposed to test me for Celiac...it was supposed to be for Crohn's/Colitis/something similar. I never asked to be tested for celiac AGAIN. i know that diet works. The 2 doctors who did listen to me have already left town...so I got nobody really. I'm positive its an IBD...side on fire = inflammation, clearly.

A couple people (including my cousin) suggested I just pick up a book on crohn's and find out what kind diet and other rules to follow and see what happens. i've always had this gut feeling thats what it is, and not sure why.

it just sucks to go thru so much painj with the tests all for nothin :(

~ Lisa ~

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Have you ever been tested for Lyme disease? I know that here in Canada doctors are even more ignorant on that than celiac disease.

No, i havent. I think doctors here in Canada are ignorant no matter what you have. It seems like once they got their mind set on one thing they think its that and dont give any effort to prove themselves wrong :angry:

~ Lisa ~

CarlaB Enthusiast
CarlaB
Posted

I just wanted to chime in that my Lyme Disease causes a LOT of GI issues. Gluten free helps, and gluten makes me sick(er) if I eat it, but gluten-free does not solve everything for me.

Andrea is correct, LLMD's screen for everything ... I think there's ONE in Canada, but I don't know where.

num1habsfan Rising Star
num1habsfan
Posted
  • Author
I just wanted to chime in that my Lyme Disease causes a LOT of GI issues. Gluten free helps, and gluten makes me sick(er) if I eat it, but gluten-free does not solve everything for me.

Andrea is correct, LLMD's screen for everything ... I think there's ONE in Canada, but I don't know where.

Well i'm pretty positive they aren't in Saskatchewan. there's nobody here :P

~ Lisa ~

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Michi8 Contributor
Michi8
Posted
No, i havent. I think doctors here in Canada are ignorant no matter what you have. It seems like once they got their mind set on one thing they think its that and dont give any effort to prove themselves wrong :angry:

~ Lisa ~

I'm sorry to hear that the tests weren't done as you expected. :( Since you didn't get the answers you were looking for, you could try to find another doctor to help you solve this puzzle. I'd suggest finding an alternative health practitioner to get a different perspective. However, you could just try to figure more out on your own too. Have you tried a full elimination diet? What about the Specific Carbohydrate Diet? It's designed to help heal the gut in cases of IBD, Chron's, Colitis, etc. Maybe it would be a good first step. Check out this website for more info: Open Original Shared Link and there is a thread discussing trying the diet here: Open Original Shared Link

Michelle

ravenwoodglass Mentor
ravenwoodglass
Posted

First off ((((((hugs))))))) you could really use some right now.

With the Chrons issue, have they done a colonoscopy on you? That would rule that out and a number of other issues. I know you have had a lot of tests and waiting on tests etc. and you must be so frustrated right now. The others have given you some great advice and I wish I had more to add. I hope you are feeling better soon.

num1habsfan Rising Star
num1habsfan
Posted
  • Author
First off ((((((hugs))))))) you could really use some right now.

With the Chrons issue, have they done a colonoscopy on you? That would rule that out and a number of other issues. I know you have had a lot of tests and waiting on tests etc. and you must be so frustrated right now. The others have given you some great advice and I wish I had more to add. I hope you are feeling better soon.

Thank you **hugs back**. you're right, i could definitely use some. And just to add to everything, my landlady called wednesday night and said I have to out by Monday :blink: . So i havent had time to relax or try recover from the whole doctors thing. Been trying to move back home as quick as possible (like i needed to be back here, right??)

~ Lisa ~

JodiC Apprentice
JodiC
Posted

Endometriosis can also cause some strange symptoms.

Also in Saskatoon there is a Biofeedback clinic that can help identify intolerance to all kinds of food. It is right next to Mom's Bulk on 22nd (I think). My mom went and did that and found out what foods she should stay away from. The cost is also very reasonable. When we come up on vacation this summer (I live in MN) I am going to go. My grandmother also goes there. I'm not completely sure how it all works but it is definately worth a try. Also look into Gano Coffee (all natural) and HTE's Chi machine. All have worked great for me and my family.

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Endometriosis can also cause some strange symptoms.

Also in Saskatoon there is a Biofeedback clinic that can help identify intolerance to all kinds of food. It is right next to Mom's Bulk on 22nd (I think). My mom went and did that and found out what foods she should stay away from. The cost is also very reasonable. When we come up on vacation this summer (I live in MN) I am going to go. My grandmother also goes there. I'm not completely sure how it all works but it is definately worth a try. Also look into Gano Coffee (all natural) and HTE's Chi machine. All have worked great for me and my family.

Thats interesting. I might have to look into it. That is on 22nd. Mom's Nutrition is usually one of my main shopping spots in S'toon for gluten-free stuff. Do you know the price range by some chance?? I'm going to S'toon tomorrow/thursday but dont think i'll be stopping into Mom's (going to Dad's Nutrition instead--other end of the city). I appreciate it if you can help me find out more info.

~ Lisa ~

JodiC Apprentice
JodiC
Posted

You may have already gone to S'toon but I think the price range is around 150.00 or less. I don't know for sure. The lady that does it is Karen. My mom was very happy with the results and feels 90% better since doing it.

Karen B. Explorer
Karen B.
Posted
The thing is that they werent supposed to test me for Celiac...it was supposed to be for Crohn's/Colitis/something similar. I never asked to be tested for celiac AGAIN. i know that diet works. The 2 doctors who did listen to me have already left town...so I got nobody really. I'm positive its an IBD...side on fire = inflammation, clearly.

A couple people (including my cousin) suggested I just pick up a book on crohn's and find out what kind diet and other rules to follow and see what happens. i've always had this gut feeling thats what it is, and not sure why.

it just sucks to go thru so much painj with the tests all for nothin :(

~ Lisa ~

The crazy part is that if you've been gluten-free, the test for Celiac won't work anyway. It's like trying to test a diabetic on a low-carb diet for their reaction to carbs. He should know that.

karenchal Newbie
karenchal
Posted

Hi Lisa,

My Son has Crohns Disease. The Symptoms are very simalar. Ask your doc to test you for this one!!

ArtGirl Enthusiast
ArtGirl
Posted

Lisa, I can surely understand your frustration with the doctor and his lack of understanding.

I'm reponding to your comment about diagnosing yourself and your feeling that your problem is Crohn's. Before I knew my IBS problems were gluten/corn related, I found a book written for people with IBD and followed the diet plan - it helped emensely... until I reintroduced gluten/corn... but that's another issue.

Restoring Your Digestive Health: How the Guts and Glory Program Can Transfom Your Life by Jordan Rubin. N.M.D. and Joseph Brasco

Open Original Shared Link

Although you might be able to find it in your library (mine has it).

Anyway, I just wanted to tell you about this book and their treatment through diet and supplementation.

If I were you, I'd still get tested for Lyme's, though, just to be sure.

Murph Newbie
Murph
Posted

Maybe things have changed, but a few years ago, the existence of confirmed DH meant definite celiac.

Have they found other causes for DH? (not just rashes that seem like DH).

If not, a dermatologist's dx for DH is enough to confirm celiac.

Also, I firmly believe that nearly all long-time celiac disease sufferers have leaky-gut & intestinal candida. It's just part of having that battleground in the gut. And it fits having reactions to many other (non-gluten) foods.

Best of luck Lisa

Karen B. Explorer
Karen B.
Posted

I know I posted this article elsewhere, but your doc needs to read it. If your doc placed you on a gluten-free diet and you've been following it, you won't test positive for Celiac -- and he should know that.

------

How long must gluten be taken for the serological tests to be meaningful?

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: There is no simple answer to this question as the susceptibility of the patient to developing celiac disease is dependent upon several factors. One factor is the amount of gluten intake. Another is the genetic makeup of the individual. However, we feel that several weeks of gluten intake, especially in doses of 2 gm gluten/day, should result in positive serology in patients with celiac disease.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The result of serological tests depends on the diet. Generally, three to six months of a gluten-free diet may result in normal antibody levels in a new patient. A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis.

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower.

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten.

https://www.celiac.com/st_prod.html?p_prodi...-49107560330.57

num1habsfan Rising Star
num1habsfan
Posted
  • Author
I know I posted this article elsewhere, but your doc needs to read it. If your doc placed you on a gluten-free diet and you've been following it, you won't test positive for Celiac -- and he should know that.

They dont know that tho, NONE of them. the only ONE who ever has was one that left town a couple years ago. And as i keep saying, I wasnt supposed to be tested for Celiac, its not what was requested or agreed on. Don't you just love Canadian health care :angry: . At least the other one here in town says he'll fill out the form for the university (THANK GOD).

~ Lisa ~

debmidge Rising Star
debmidge
Posted

They dont know that tho, NONE of them. the only ONE who ever has was one that left town a couple years ago. And as i keep saying, I wasnt supposed to be tested for Celiac, its not what was requested or agreed on. Don't you just love Canadian health care :angry: . At least the other one here in town says he'll fill out the form for the university (THANK GOD).

~ Lisa ~

Lisa: In Canada, if you contact the Bureau which licenses doctors will they tell you where your doctor went? where he'she's practicing now? I know here in NJ there's a website for this purpose.

Deb

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Lisa: In Canada, if you contact the Bureau which licenses doctors will they tell you where your doctor went? where he'she's practicing now? I know here in NJ there's a website for this purpose.

Deb

Hmm i'm not sure Deb! I honestly never heard of anything like that. From what I know, they either have gone back to South Africa or to another province. So it'd be impossible for me to see them, anyways. :unsure:

~ Lisa ~

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.