Celiac Disease Support Group

Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley (as hordein).

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New to Celiac - Background & Questions

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



Did the bottom of your post get cut off? This site doesn't like the 'less than' and 'more than' signs and cuts off the rest of your post if you use them

Your elevated ESR and CRP would indicate inflammation. Because you have swollen joints I'd recommend seeing a rheumatologist.

Have you had your thyroid function and ANA done?

Good luck

Sorry for all your troubles, trayne91. Wabby is correct when she says that elevated ESR and CRP indicate inflammation, as I deal with them and must keep an eye on my levels all the time. In addition to the tests mentioned by Wabby, I wondered if you had your vitamin and mineral levels checked, esp., vitamins d and b-12. Also, if you were checked for celiac, please realize that your tests can be negative and yet you could still have gluten sensitivity. One of my doctors told me that if a person suspects gluten problems, s/he should take the 90-day challenge. Keep seeking for answers, and best wishes to you.

Yep. Used the les than sign. Sorry! Here's the rest.

Tissue Transglutaminase AB IgA less than 20 normal. Mine is 20 units (noted as high)
This is all I can find on my blood work list with IGA or IGG on it.

Gliadin IGA Deamidated less than 20. Mine is 8 units Normal
Gliadin IGG Deamidated less than 20. Mine is 2 units Normal
Tissue Transglutaminase AB IgA less than 20. Mine is 20 units High
Tissue Transglutaminase AB IgG less than 20. Mine is 2 units Normal

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. 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.

Plus, what is next? Is there anything else to be looking out for? Is it normal to test normal for some parts of test and high on others like I did? Is biopsy the final indicator?

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.

I've had thyroid tested multiple times and is always good.

I don't know what Ana is.

My dr. Did tell me high sed rate and c-reactive protein is also an indicator of celiac. So with those being high and my iga test at 20,just out of normal range, I needed to see the gi and specialist as she was leaning toward the celiac at this point in time. I wonder what other conditions these exact same high rates are indicators for, if not celiac? Although celiac would explain the yeast, asthma, migraines, anxiety, tingly legs, fatigue, bloating, etc. A lot of symptoms...

Thought so =]

Only one of your tests would be considered positive, and only just. I don't know if many doctors would consider that a positive either. I'd suggest you get them to retest it. Eat a lot of gluten in the mean time. I'd also suggest you ask for them to do the gene tests too.

I agree with Nanny, they are definitely important ones to have checked.

The 'annoying' thing about Celiac Disease is that it doesn't actually matter whether you have ALL of the symptoms listed or none. If you have positive blood tests/biopsy you have Celiac Disease. If you don't, it doesn't matter how many symptoms you have, you don't have Celiac Disease. This would be true if all the tests are accurate, but they're not. The biopsy is the real test needed, but they can often miss the damage.

But you can definitely have a normal blood test and biopsy and still have a serious problem with gluten. So I wouldn't have your hopes set on being diagnosed with Celiac Disease because they're pretty specific about needing the biopsy to be positive.

But anyone and everyone with a problem with gluten is welcome here. The treatment is exactly the same. So what I'm really trying to say is that if they call it Celiac Disease or not and you feel better gluten free, it doesn't really matter.

Your next step will to be either not be phased by a diagnosis and go gluten free and see if you're feeling better. Or you see a gastroenterologist and go through the biopsy, which may or may not show something. If it shows something then you MUST go gluten free. If it shows nothing, then you either continue down the same path, or you try going gluten free and see if you feel better.

If you're diagnosed, then your immediate family needs to be tested.

I would suggest you have more tests to find out what's going on with your joints and elevated ESR and CRP. These tests aren't elevated in people with Celiac Disease.

The most important thing is that if you're going forward to have the biopsy and repeat blood tests, you MUST continue to eat gluten

Good luck.

Thank you so much for sharing that! I will be going ahead. It's the first time in years I've Been on the road to getting some type of answer. More bloodwork and tests from gi should put me closer to the right track, celiac or not. At least I am heading in the right direction while I keep doing my own research. I will keep you posted. Guess I need to look up some things on high sed rates and crp rates. See what I can find. Does inflammation mean inside the body or would this be connected to the swelling I experience in my legs and hands? Or would my intestine be inflamed from celiac?

I found Ana on my tests. It was negative, which I read is good becuz it rules out arthritis and lupus.

That's good your ANA is negative, that does help to rule out a number of conditions, but there are many rheumatic diseases that don't have a positive ANA. Have you had the rheumatoid factor test? This is positive in 70% of people with RA. What about the HLA-B27 gene? Do you have Psoriasis?

I hope you find the answers, but be prepared to get knocked down a few times.

I'd say that your high ESR and CRP need to be investigated before Celiac Disease. It'd be most likely coming from the swelling in your legs and hands. Celiac Disease doesn't cause elevated ESR and CRP.

I would be asking your GP for his/her explanation of your high ESR and CRP, but I would recommend you see a rheumatologist.

Trayne, when the doctor ran tests for RA and Lupus on me a few years ago, the tests came back negative. But last year I was diagnosed with overlapping Lupus based on skin biopsies. Also, my blood test was negative for CD, but I am definitely gluten intolerant. In fact, gluten raises my inflammation levels, especially my Sed. Rate. Inflammation can be deadly for me, as the inflammation negatively affects my muscles, which exacerbates my Polymyositis. Left unchecked, the muscle inflammation prevents my muscles from receiving signals sent from the brain, thus causing paralysis and muscle atrophy. So I will stay GF for life.

As for UTI's, I just had one. My doctor said that inflammation can cause placques in the body to become sticky, allowing bacteria to stick and grow. She told me that it's important to keep inflammation down in the body to avoid the "stickiness" that can cause many problems. She recommended drinking water and avoiding tea, caffeine, and sugary drinks. Also, she suggested that I take cranberry pills everyday, because most "cranberry juice" nowadays either has sugar or other juices mixed in.

Here is a video by Dr. Peter Osborne. It's long, but provides lots of information about gluten that you might find helpful.
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