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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

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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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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 :)

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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.

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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?

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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.

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    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
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