Someone answer please

What do you think is wrong with me?
1
Celiac disease - 50.0%
0
Non-Celiac gluten intolerance - 0.0%
0
IBS and Lyme disease - 0.0%
1
Lyme disease and Celiac disease and IBS - 50.0%
0
Probably something else - 0.0%
0
Too hard to say - 0.0%

 
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Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 4/4/2014 2:57 PM (GMT -7)   
Hello there,

Please answer either question 1 or 2 or both according to your knowledge levels in the topics.

Question One:

I have recently been diagnosed with Celiac based on these things:
•low positive TTG levels (20, which is borderline "negative") when on a low-gluten diet (traces of gluten)
•positive IgA antibodies (after considering that I am IgA deficient)
•ANA has been 1:160 for the last several years but is now negative/normal on a completely gluten free diet.
•I have many typical and atypical symptoms of Celiac when I eat gluten, and these subside when I don't eat ANY gluten AT ALL. (The symptoms still stick around if there are traces of gluten in my diet.)

Confounding factors:
•I have previously been diagnosed with fibromyalgia and irritable bowel syndrome (including intolerance to lactose, fructose, FRUCTANS, and galactans - determined by a dietitian over 9 months of an elimination diet when I was 15).
•All my atypical Celiac symptoms started with a flu-like illness when I was 16 - I'm currently being tested for chronic Lyme disease, since I have never before been tested or treated for Lyme, and it's been over 3 years now since I got "it", whatever it is that causes all my hundreds of symptoms that suddenly came on.
•BUT I have been diagnosed with IBS for 4 years longer (since I was 12) than when all the other symptoms started. I was experiencing IBS throughout childhood though, to the best of my memory.
•When I was a baby, I cried a lot compared to how much my other 3 siblings cried as babies. I was always regurgitating half my food until I was a toddler - and then my mum doesn't remember any more digestive problems, but my earliest memories start at about 2, and I remember the stomach cramps, nausea, headaches, constipation, diarrheoa and not wanting to eat because it hurt my stomach to eat.


Is this sufficient for a diagnosis? I have a nurse friend who insists that I need an endoscopy and sigmoidoscopy for her to believe the diagnosis. Which makes me just the tiniest bit uncertain of whether or not I'm actually Celiac. Maybe I have non-Celiac gluten intolerance?

I don't want to keep on eating gluten just so that I can have a positive biopsy. It's not worth the pain. I had a clear endoscopy and colonoscopy last year, after having been gluten free for 7 months, so I know there's nothing else wrong with my digestive tract except perhaps Celiac. (It was after the endoscopy that I started having traces of gluten.)

-------------------------------------------

Question Two:

Before I went gluten free, I was having a lot of bowel/digestive problems. The doctor ordered a Bioscreen (stool screening) test which I haven't been able to afford to have done yet. Since going gluten free, I have been having what I'm pretty sure are normal bowel movements. Is it worth paying $300 for the Bioscreen test when my stools seem normal now? F.Y.I. I'm already in some financial distress.

---------------------------------

Thanks everyone :)
Age: 19
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."

Post Edited (Jasmine Grace) : 4/5/2014 3:15:21 AM (GMT-6)


Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 4/6/2014 11:42 PM (GMT -7)   
Can someone please answer at least my first question?
Age: 19
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 4/7/2014 6:33 AM (GMT -7)   
I don't know a lot about celiac, but did find this National Institute of Health site discussing how it is diagnosed:

digestive.niddk.nih.gov/ddiseases/pubs/celiac/#diagnosis

I hope this is helpful to you.
Thyroid forum moderator

Ulcerative colitis since 2001, starting 8th year of remission with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Eczema, darn it!

"It's always something." ~ Rosanne Rosannadanna

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 4/7/2014 9:50 AM (GMT -7)   
Jasmine, as far as your childhood experience is concerned with crying and spitting up, it sounds like you had reflux and probably still do. It's quite common, and there are several strategies you can employ to reduce the symptoms, which include regurgitating your meals, upper gastric pain, and maybe even chronic cough.

I would say that constipation is also pretty common, especially for kids who don't necessarily make the best choices with regard to fiber vs. junk. Hopefully now you are much more aware of how to eat a healthy balanced diet, which should include fresh vegetables, fruits and whole grains.

The diagnosis of "IBS" is pretty much a bucket diagnosis made in the absence of anything else that fits. If you have celiac disease that's enough to cause many of the digestive problems that are otherwise considered "IBS." That's not to say you don't have some functional disorder that challenges you with diarrhea and gas. It's not possible to say.

I don't know what you mean when you say "atypical flu," but viral infections can cause all kinds of stomach upset. I think it's smart to get tested for Lyme.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 4/7/2014 4:23 PM (GMT -7)   
Thanks :)

I do have acid reflux which I am managing by diet and stress management. I just didn't know that I'd had it all my life... I only thought I'd had it for the last few years when I also started getting the chest pains.

My mum always fed us a healthy, balanced diet... And I still do eat healthily, I just now eliminate gluten and minimise FODMAPs in addition to a normal healthy diet.

A lot of my IBS symptoms have gone since being gluten free and low FODMAP. I have some symptoms yesterday and today, but that's because I ate too much fructose, and I know it.

Okay, so you're saying that the blood test is not definitive and it's better to go by my response to a gluten free diet?
Age: 19
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 4/7/2014 4:24 PM (GMT -7)   
Really? Is that what my chronic cough is caused by?
Age: 19
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 4/7/2014 6:25 PM (GMT -7)   
I don't know about the blood test. I would trust it. And I would also say that adopting a GF diet isn't going to hurt you.

I do think testing for Lyme is a reasonable thing to do, especially if you live in a high risk area. But if you're feeling better I wouldn't bother.

And yes, chronic cough is often due to reflux. And reflux is generally a life-long thing, sometimes better, sometimes worse. You can try taking a ppi and elevating the head of your bed to see if that helps. Your DR should be advising you about this.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 4/7/2014 7:01 PM (GMT -7)   
Ok. The only thing is I don't have a lot of money and a GF diet is expensive.

I'm feeling better in regards to IBS, yes - but not in regards to many of my other symptoms that are indicative of Lyme. Mostly it's the fibromyalgia and chronic fatigue syndrome and neuropathic pain and absence seizures and brain fog that are bothering me still...

I have tried a couple meds for acid reflux but they don't seem to help much at all.
Age: 19
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 4/8/2014 6:31 AM (GMT -7)   
GF doesn't have to be expensive. You just avoid things with gluten. And prepare your own food, more or less. What's expensive are all the processed GF foods, which are treats and not necessary for anyone's daily diet.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

guyfeelsgood
Regular Member


Date Joined Apr 2014
Total Posts : 161
   Posted 4/11/2014 8:39 AM (GMT -7)   
if you have the money....and its not cheap you can try this route...it helped me. NOTHING ever came back for gluten or milk or sugars in standard allergy tests IGE prick test in the arm...or CAPRAST and drinking the lactose drink for me. I was told make a food journal.. for me I was to lazy and dint really see for me how i could really pin point something

I found from search you can have delayed allergies up to 3 days... not picked up in standard testing
I went this route...found all my issues in blood
http://www.elisaact.com/nonhc/our-unique-testing-method.asp used for this
Migraines, autoimmune problems, Lupus, Fibromyalgia, Asthma, Diabetes, Thyroiditis, Rheumatoid Arthritis intolerances.
where to test http://betterlabtestsnow.com/delayedallergytests.aspx

I then found testing for FECAL gut IGE same as the allergy office but in the gut...they look at the antibodies in a lab to stool... https://www.enterolab.com/default.aspx
testing --https://www.enterolab.com/StaticPages/TestInfo.aspx#PanelA1C1

form here I got answers from the both of these..... ITS NOT CHEAP ..I cant say it will work , its just what I did and some tools you might be able to use

I also genetic tested with lab corp I carry these genes in the HLA DQ area the way it works is you NEED one in A and one in B to have the possibility to have gluten issues( you can have a set and not get CELIAC) for me I have many genes so , I say Im intolerant.... plus from the advanced tests above...I was reactive to sugars and gluten between the gut and BLOOD( advanced testing only)

MY genes and NOT GOOD!!!!!
1) DQA1*05:01 one copy associated with coeliac disease
2) DQA1*05:05 one copy associated with coeliac disease
3 )DQB1*02:01 associated with type 1 diabetes , copy associated with coeliac disease
4) DQB1*02:02 one copy associated with coeliac disease
As well I have more ---that fall under disease association / celiac Disease HLA DQA/DQB
HLA DQ ALLELES detected disease associations
5) DQA1*01:02---- narcolepsy- sleep disorder
6) DQB1*06:02 --- narcolepsy- sleep disorder, type 1 diabetes, type 2 Diabetes, , pemphigus-- Pemphigus
This doesnt mean I will get all these....It means I carry the genes and have a very good chance to get these.. The funny part is , many in my family tree moms side--- had stomach issues, type 2 and sleeping problems , my mom sleeping /sister.. my mom stomach problems IBS

from here I did another lab corp test --IBD EXPANDED PANEL -- google it and put those words in the labcorp web site youll see what it tests for -- AMCA ALCA ASCA ACCA

Here I came back with AMCA-- which was candida yeast.. I was reactive to it... and SUGARS ALCA =sugar
I formed my diet around this and it helped..

I then tested at great plans lab(ANOTHER ADVANCED LAB) to look at my bacteria and yeast levels. I had LOW good bacteria and HIGH YEAST.. which feed on sugars.. I did two test (OAT TEST organic acid and then there COMP STOOL) http://www.greatplainslaboratory.com..

from there I also found -- and read that the protein in gluten looks like the protein yeast(candida)
I ate gluten free grain free , and limited my sugar for over a year.. This seemed to help me
bring my self back in balance , but with the use of PROBOTICS and antifungals.

IM NOT GOING TO SAY THIS WILL WORK FOR YOU......but you may want to look at some of these tests...
it may help you pin point some of your issues. OR be of some value as a tool

Today my yeast is normal, and I can eat , some sugars and gluten and starches... I just dont take the risk very often or eat alot... I dont have any problems _ Im sure if I ate all those sugar foods or ate alot of grains it would bring it all back...
-----------------------------------------------------------------------------------------

You can also look at DOUG kauffman and his phase one diet... IF you skip all this AS IT IS PRICEY!!!!!!
you can try this route!!!!
http://www.robinallan.com/uploads/1/6/2/7/1627227/antifungaldiet.pdf
www.knowthecause.com he is the dude to go to if you think yeast...he points to yeast as the cause of many health issues causing your good bacteria to go low...

Many people have had success on his diet... it limits sugars like SCD but also doesnt feed yeast/fungus
some of the same foods also dont FEED BAD bacteria


again this is not intended to be a cure just maybe some help pin pointing some of your issues , if it helps AWESOME !!!! you may get some tools or tips from some of this

EDDIE

guyfeelsgood
Regular Member


Date Joined Apr 2014
Total Posts : 161
   Posted 4/11/2014 8:42 AM (GMT -7)   
Jasmine Grace----

this is one of dougs videos ... look over his site its very interesting how he shows things and history books etc ..make your own opinions.. check out his site and look over his material and stuff...videos etc

this was a video on Fibromyalgia
http://www.knowthecause.com/index.php/contributor-blog/27-healthy-living/170-fibromyalgia-know-this
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