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NancyN
Joined: 12 Jun 2008
Posts: 1
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 Posted: Thu Jun 12, 2008 11:07 pm Post subject: new to this forum...have questions |
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I just had some questions...this looks like a good place to ask!!
I had blood work done that says it's "highly likely" that I have Celiac disease. My numbers were all pretty low. The test was done at the Promethius Lab. I do have the Celiac gene. My biopsies came back negative. My doctors still question if I have Celiac because I am not improving gluten free.
I never had intestinal issues. I had some other things going on and all the sudden I lost a lot of weight fast and my hair started falling out. So I had an ANA test and the only thing that showed up was one of the antigliadin.
I wanted to know so I had the bloodwork done and the biopsy.
Now my health just keeps declining and I've been tested for everything under the sun. Nothing comes up.
Rather than search further my doc says I may not be Celiac and try going back to normal eating.
Positive bloodwork means a definite yes, right?
Today I had a test for SIBO. Does anyone know anything about this?
My levels were really high to start, went to normal then declined, then the last breath shot way up. The nurse said that was the strangest result she had seen. I'm waiting to hear from the doc...but does anyone know what results might mean?
I'm scared because I'm emaciated and can't seem to gain weight and react to everything I eat it seems.
I am being very careful and have been GF for 4 months.
My brain function gets worse and worse and I don't know where to look next. The docs don't want to do any further testing?
Can someone help with any suggestions???
Thanks! |
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aklap
Joined: 02 Oct 2004
Posts: 10971
Location: WI, USA
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| Posted: Fri Jun 13, 2008 12:38 am Post subject: |
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Hi Nancy,
Welcome to the board! Sorry you're having to deal with this. 
Note: when you see light blue text down below - that is a hyper link. Click it and it will display a new page with more info.
| Nancy wrote: | | My doctors still question if I have Celiac because I am not improving gluten free. |
Did the doc run follow up blood work? Generally this is done to check for dietary compliance.
You said you've been GF for 4 months - when did you have the testing done? Hopefully it was before you went GF.
I am a bit confused...
| NancyN wrote: | | I had blood work done that says it's "highly likely" that I have Celiac disease. My numbers were all pretty low. |
I'm not sure what this means?
Do you know what tests were done? If they're done thru Promethius [a good lab] more than likely they ran a complete celiac panel - be sure to check out the Non Celiac Gluten Sensitivity links in here. It sounds like the Antigliadin IgA and/or IgG were run. This may give you clue if gluten is a problem for you. These tests have fallen out of favor due to lack of specificity [other medical conditions outside of CD can cause false positives]. As I said it might give you a clue if your body is reacting to gluten. The current favored test is the tTG. This is highly specific to CD, but it does have some draw backs.
Generally, the number one cause of people not getting better on a GF diet is...gluten getting into the diet. Gluten is pretty sneaky and can hide almost everywhere. It doesn't take much [we're talking parts per million here] to keep your body fired up.
Please, don't take offense to my questions, I have no idea how much you know about determining the GF status of products. Knowing how to determine if food is GF takes a bit of time to figure out.
How do you determine the status of products?
Do you call the manufacturer?
Do you read labels?
Do you know how to decipher reading the labels to determine if a product is GF?
Have you checked an meds or supplements that you might be on for gluten? [this is an easy one miss].
Do you live in mixed house [you're GF, but others are not]?
Might there be cross contamination issues? You use the same toaster, NGF housemates are double dipping in the ______ jar.
Do you use wooden spoons that are use for NGF food? Anything porous like wooden spoons should be trashed and you get your own GF utensils.
Gosh - I think that's all I can think of off the top of my head right now. I'm sure I'm missing a bunch - but it's a start.
You might check out Our Thread on GF Diet Boot Camp to see how your current GF-dom compares to the topics and info presented here.
Another consideration - you could very well have other food intolerances. It quite common to have multiple intols going on at the same time. Perhaps soy, or corn, or any number of other foods may cause you problems. Do you notice flares of symptoms...or do you just feel crappy most of the time? Keeping a food journal might help. It might help you see some type of pattern if you track what you eat, when you eat and how you feel.
SIBO = Small Intestinal Bacterial Overgrowth. I can't say I know a lot about it, perhaps some of the others here might. You might try poking around over here.
Good luck in your knowledge quest!! I hope you get to the bottom of this. Don't be afraid to ask questions!!
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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Luv2Dance
Joined: 15 Apr 2008
Posts: 64
Location: Colorado
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| Posted: Thu Jun 19, 2008 1:46 pm Post subject: Bummer. |
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Hi Nancy.
I'm sorry to hear about your difficulties. There are many things that may be causing your problems. Even if you are eating gluten free, and are still having symptoms and some other problems, it is likely that you have not found all of your food allergies. You may be allergic to dairy, nightshades, eggs, or who knows what else. I would suggest keeping a food diary, trying an elimination diet, or my personal favorite- getting the IgE and IgG blood tests for finding out some thngs that may be causing you upset.
You may also want to look into Systemic Candida, or Multiple Chemical Sensitivity. Not know the list of your symptoms, and since I'm not a doctor, I can't gaurauntee that anythying I'm saying is perfect; however, hair loss is a symptom of MCS, and I recognize your other symptoms as being from Systemic Candida.
Look up the symptoms for MCS and Systemic Candida, and see if they match, if so, you would beed to start a detoxing program a long with vitmamin supplements and find a good naturopathic doctor that deals with this to guide you.
In either case, I suggest finding a Certified Naturopath and Licensed MD that you can take ALL of your previous tests to to save money on repeating anything, and check the rest.
Systemic Candida is listed as one of the reasons causing Fibromyalgia by some doctors who beleive in this approach, and it can cause the decline in mental functioning you are referring too.
I hope I'm not way off base. Good luck. |
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loretta
Joined: 20 Nov 2008
Posts: 1
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| Posted: Wed Feb 11, 2009 9:56 pm Post subject: SIBO |
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| You sound just like me. I have reactions after I eat everything too. My tests showed high risk for celiac. I had some tests done a year ago by a more liberal dr. and it showed candida/wheat sensitivity, and dysbosis. The gastro dr. said I sounded like I had SIBO. I had my gallbladder out because they said it was only working 21% but that changed nothing. I am bloated, constipated, drowsy after eating, and tired. I am now on antibiotics for 60 days and taking probiotics. What have you found from your tests? |
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aklap
Joined: 02 Oct 2004
Posts: 10971
Location: WI, USA
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| Posted: Fri Feb 13, 2009 4:18 pm Post subject: |
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Hi Loretta,
Welcome to the board! Sorry to hear you've been having problems.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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