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#1 trayne91

 
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Posted 13 April 2012 - 11:40 AM

Hello all. I am new to this board. I have been reading in the forums and you all seem like a great, helpful bunch.

Here's my story:

Background - Always seemed to be pretty healthy besides getting tonsilitis and bronchitis a lot. I was diagnosed with WPW symdrome at 17 and since had an ablation and am "cured".

In 2006, I developed swelling. I went to a concert dancing in the sun and the next day, I was swollen with my feet up. I've had trouble with swelling ever since. I don't even have to move and I swell up. My feet and hands are the worst, especially in the heat or when I exercise.

2010, I had a hysterectomy due to fibroids on the uterus. My uterus was removed. It took me a long time to heal. It was about 6 months before I could walk well without pain. Shortly after I developed a yeast infection that just will not go away! My gyno tells me it's a weird strain and I have gone at the most 4 weeks without it recurring and having to take something for it again. Diflucan does not work on it. I have to take a 7 day cream of Tetraconyzole and once it's gone, I get it right back for over the last 2 years. Frustrating. In the fall of 2010, I also developed anxiety and was having panic attacks in stores and in the car. I am since working through that. In 2009, I started seeing aura in the corner of my eye sometimes and by December of 2010, I was having severe migraines, not just aura, but with pain and pressure. I am taking something for that now. Last fall (2011), I started bloating. My belly has bloated up so bad I look 6 months pregnant. I can't button my pants any longer and have to wear "comfies". I keep telling Drs that something is wrong, but all I get is to put my feet up and lose some pounds. I know I can stand to lose a few pounds, but I am totally unproportioned. I went from 140 to like 180 in one year and belly does not match the size of my legs. I got little legs and big belly. I look silly. It's all in the belly and I can tell something is totally wrong.

I finally got my Dr. to listen to me and I had a bunch of blood work done. I have had scans of the head and all fine, in case anyone is wondering. My bloodwork came back with this:

C-reactive protein 0-0.9 mg/dl normal. Mine is 1.3 (noted as high)
RBC Sed rate 0-20mm/hr normal. Mine is 25 (noted as high)
Tissue Transglutaminase AB IgA <20 normal. Mine is 20 units (noted as high)

I did a lot reading online now and have read how yeast can trigger Celiac and yeast (candida) is a symptom as well, - as well as migraines, anxiety, bloating.

My Dr. has referred me to a GI Specialist who I am waiting for a call from to determine next steps. My Dr. is leaning toward Celiac because of my test results. She says all my high results can be caused from Celiac.

I guess just looking for support. If anyone has the same symptoms as me or knows anything more about my symptoms and/or test results that could lend their opinion, experience, etc. I am new to all this. I don't know what to expect or much of anything about Celiac at all.

Thank you,
Tracy
  • 0

Tracy

Gluten-free 5/14/12. Elevated TTG IGA 4/12
Positive biopsy (flat folds and elevated Intraepithelial lymphocytes) 5/9/12
Results delivered 5/14/12
Migraines, swelling, bloating, asthma, tingling in legs, anxiety, fatigue, etc...
Low Vitamin D 17. Three years of 1000 IUs of D3 a day, now up to 36 (30 normal)
Hysterectomy 1/2010
WPW Syndrome - Diagnosed at 17. Ablation 9/2006


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#2 Bubba's Mom

 
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Posted 13 April 2012 - 01:19 PM

Hello all. I am new to this board. I have been reading in the forums and you all seem like a great, helpful bunch.

Here's my story:

Background - Always seemed to be pretty healthy besides getting tonsilitis and bronchitis a lot. I was diagnosed with WPW symdrome at 17 and since had an ablation and am "cured".

In 2006, I developed swelling. I went to a concert dancing in the sun and the next day, I was swollen with my feet up. I've had trouble with swelling ever since. I don't even have to move and I swell up. My feet and hands are the worst, especially in the heat or when I exercise.

2010, I had a hysterectomy due to fibroids on the uterus. My uterus was removed. It took me a long time to heal. It was about 6 months before I could walk well without pain. Shortly after I developed a yeast infection that just will not go away! My gyno tells me it's a weird strain and I have gone at the most 4 weeks without it recurring and having to take something for it again. Diflucan does not work on it. I have to take a 7 day cream of Tetraconyzole and once it's gone, I get it right back for over the last 2 years. Frustrating. In the fall of 2010, I also developed anxiety and was having panic attacks in stores and in the car. I am since working through that. In 2009, I started seeing aura in the corner of my eye sometimes and by December of 2010, I was having severe migraines, not just aura, but with pain and pressure. I am taking something for that now. Last fall (2011), I started bloating. My belly has bloated up so bad I look 6 months pregnant. I can't button my pants any longer and have to wear "comfies". I keep telling Drs that something is wrong, but all I get is to put my feet up and lose some pounds. I know I can stand to lose a few pounds, but I am totally unproportioned. I went from 140 to like 180 in one year and belly does not match the size of my legs. I got little legs and big belly. I look silly. It's all in the belly and I can tell something is totally wrong.

I finally got my Dr. to listen to me and I had a bunch of blood work done. I have had scans of the head and all fine, in case anyone is wondering. My bloodwork came back with this:

C-reactive protein 0-0.9 mg/dl normal. Mine is 1.3 (noted as high)
RBC Sed rate 0-20mm/hr normal. Mine is 25 (noted as high)
Tissue Transglutaminase AB IgA <20 normal. Mine is 20 units (noted as high)

I did a lot reading online now and have read how yeast can trigger Celiac and yeast (candida) is a symptom as well, - as well as migraines, anxiety, bloating.

My Dr. has referred me to a GI Specialist who I am waiting for a call from to determine next steps. My Dr. is leaning toward Celiac because of my test results. She says all my high results can be caused from Celiac.

I guess just looking for support. If anyone has the same symptoms as me or knows anything more about my symptoms and/or test results that could lend their opinion, experience, etc. I am new to all this. I don't know what to expect or much of anything about Celiac at all.

Thank you,
Tracy

Hello..and welcome! A lot of us have gone through years of health issues that didn't seem to have obvious causes. It sounds like you're on the right track going to see a GI? Ask for the Celiac panel, in case he doesn't think of it.
Once your testing is done, you may want to try gluten-free no matter what the results? They say 20-30% of us test negative, but still have a problem with gluten.
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#3 mushroom

 
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Posted 13 April 2012 - 02:37 PM

IIf the normal range for tTG is under 20, and yours is 20, then you are outside of the normal range. I am glad your doctor has referred you to a GI because many would be dismissive of something that is barely abnormal As Bubba's Mom says, I would ask the GI to run the full celiac panel

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

and he will probably also schedule you for endoscopy with biopsy. Make sure he takes enough samples, like 6-8 because the damaged areas are easily missed. Your CRP and sed rate are both measures of inflammation so could well be celiac indicators. There are different manifestations of celiac disease. The most common is in the gut (bloating, digestive issues), but there is also a neurological form, hance the migraines and anxiety. Yeast is a common problem with celiac, as are UTI's.

By the way, congratulations on your successful ablation :)
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 trayne91

 
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Posted 13 April 2012 - 03:13 PM

Thank you for the full Celiac Panel suggestion. I will make sure that happens as moving forward. As much as I hate seeing something wrong, I do like having answers. My Vitamin D was 17 well below normal range of 30-100. I've been taking 1000 IU of Vitamin D for 2 years now and my test results I got back with the above referenced tests showed my Vitamin D to be at 30.06. So, I just made it by .06 into the normal range after 2 years of taking the vitamin D to help. Drs were checking it because of my recurrent yeast infections. I do take Florajen, a propbiotic, to help with the yeast, but it's not doing anything better. But, I keep taking it as recommended by my obgyn. She says it takes a long time. I guess even longer if it's Celiac! I also have fatigue. I've slept 10 hours a night since I was a kid, but now I can sleep 12+ hours a night if no one wakes me up. I can stay up forever, but once asleep there is no waking me and I feel tired all the time. I also have tingling in my legs, been breaking out more (with pimples on my face and body), asthma since a baby, unregular bowels, among other things. And oh yes, the UTIs. I get those too, very acutely and very painful.

I also worry with my son as he has had stomach issues his whole life, has fainted, had migraines and now been diagnosed with cluster migraines, he has some eczema by his eye right now, achey joints, and is always tired, too. So, maybe we may have answers for both of us. I read it is hereditary? We'll see after my tests are done. I'm currently waiting for GI referral to call to schedule my appt.

If there is anything else I should be asking at the Dr. or making sure they do anything else, please let me know. Thank you so much for your answers. It will help me to be prepared at my Dr. appt.
  • 0

Tracy

Gluten-free 5/14/12. Elevated TTG IGA 4/12
Positive biopsy (flat folds and elevated Intraepithelial lymphocytes) 5/9/12
Results delivered 5/14/12
Migraines, swelling, bloating, asthma, tingling in legs, anxiety, fatigue, etc...
Low Vitamin D 17. Three years of 1000 IUs of D3 a day, now up to 36 (30 normal)
Hysterectomy 1/2010
WPW Syndrome - Diagnosed at 17. Ablation 9/2006


#5 trayne91

 
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Posted 13 April 2012 - 03:38 PM

I just took a look back at my test. It does look like I need some of the tests your recommended in the complete panel, but I did have more done. This is all I can find on my blood work list with IGA or IGG on it.


Gliadin IGA Deamidated <20 8 units Normal
Gliadin IGG Deamidated <20 2 units Normal
Tissue Transglutaminase AB IgA <20 20 units High
Tissue Transglutaminase AB IgG <20 2 units Normal

I will be sure to ask for all of it at my GI appt. Is it common to have some test areas normal and others high indicating Celiac? Is the biopsy the final determination?
  • 0

Tracy

Gluten-free 5/14/12. Elevated TTG IGA 4/12
Positive biopsy (flat folds and elevated Intraepithelial lymphocytes) 5/9/12
Results delivered 5/14/12
Migraines, swelling, bloating, asthma, tingling in legs, anxiety, fatigue, etc...
Low Vitamin D 17. Three years of 1000 IUs of D3 a day, now up to 36 (30 normal)
Hysterectomy 1/2010
WPW Syndrome - Diagnosed at 17. Ablation 9/2006


#6 mushroom

 
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Posted 13 April 2012 - 04:46 PM

Well, of the tests in the celiac panel, they did run the most predictive, and they did run both the IgA and IgG versions. The reason for the total serum IgA is because if you do not produce normal quantities of IgA all the IgA test results are invalidated and they have to do the IgG versions. Here, you have already had them. The first two tests, the Anti-Gliadin, are not relied upon so much any more, and the EMA is normally what they call a cascade test, only run if the tTG is positive. So you have one positive celiac test. You do not have to "pass" all the tests. Just one is usually enough, although as I mentioned, a lot of doctors would disregard a result only one point above normal. The biopsy has long been considered the "gold standard" of testing and most doctors would not diagnose celiac if that were not positive. However, it depends a lot upon the skill of the doctor performing it, whether he takes enough samples, the skill of the pathologist reading it, and sometimes just plain luck that they happen to biopsy one of the damaged areas. Even Dr. Fasano, who is considered the supreme celiac expert will now diagnose celiac with a negative biopsy if all the other factors are positive - symptoms, positive blood test, postive genetic test (although this is only supportive, not definitve) and positive response to the diet.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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