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Newbie Mostly Asymptomatic


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#1 EstherRB

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Posted 21 January 2013 - 11:09 AM

50 year old athletic female diagnosed initially with osteoporsis (via obscure foot stress fracture and bone density scan). Three years earlier a bone density scan showed osteopenia. Hit menopause quite early, like when I was 45. MD did blood work and I came back crazy high for celiac. I don't eat bread or pasta (except for when I visit my Italian-American family in PA at Christmas; I live in Santa Barbara), make my own soups and salad dressings. Eat 4-5 fruit a day. Water drinker. Very much a creature of habit: Dinner is either fish with roasted vegetables or a pork chop cooked simply in EVOO and salt and pepper.

I did have colic as a baby...and my only other celiac-related symptom was the 6 month pregnancy belly after having a beer (but who doesn't bloat up after drinking one).

After reading multiple posts, I'm leaning against the endoscope for confirmation. Blood work in July only revealed that I was over the normal range. Blood work from last week (and different lab) came back as follows:

Gliadin AB IGA 226.8
Gliadin AB IGG 160.0
Tiss Transglutaminase IGA 300.0
Endomysial AB IGA Positive 1:80
Tissue Transglutamanse IGG 116.4

I have an appointment to see a gastro guy next month.

What about probiotics? Again, I have no symptoms and was completely dumbfounded by the results.
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#2 Takala

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Posted 21 January 2013 - 11:51 AM

Hi and welcome.... uh, you do have "symptoms," it's the bone loss, early menopause, and bloating.... that's why it takes so long to be formally diagnosed, because of the stereotypical idea that it merely is a wasting disease and one is supposed to look pathetically scrawny. Italy is well known for having a larger percentage of celiac gene carriers, celiac awareness, and is touted as an overseas vacation destination, because the restaurants over there do have a clue.

"Gastro guy" will probably want to scope your innards. It's what they do ....
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#3 TGK112

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Posted 22 January 2013 - 05:37 PM

I had a similar situation. My osteopenia turned to osteoporosis - despite being on Alendronate (Fosamax) for the past two years. It came as a shocker to be diagnosed with Celiac since I had none of the obvious symptoms. I'm also a healthy eater - but probably indulge in carbs more than you do. I did go through with the endoscopy which confirmed Celiac. It was explained to me that not only does Celiac contribute to osteoporosis because of malabsorption issues, it also affects bone health just because ANY inflammation in the body is bad for bones. I will be having a follow up blood test and endoscopy next month ( after being gluten free for 6 months)
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#4 mushroom

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Posted 22 January 2013 - 06:11 PM

Whoa, those are really high blood test numbers. I would certainly not bet against those numbers, particularly with progression from osteopenia to osteoporosis with stress fractures. Have you had testing for vitamin and mineral deficiencies too? I would bet low on D3, calcium, probably B12, magnesium, at least. Something your MD can do while you are waiting to see the GI. The endoscopy would be useful to see the extent of the damage so you can compare your testing into recovery, but I feel pretty confident it will confirm your diagnosis. You do not need to have GI symptoms to have celiac.

Probiotics and digestive enzymes can help healing and digestion once you are gluten free, but until that time (and I hesitate to say this because your scores are so high that I doubt you would heal in that time) you should continue gluten until you have had the endoscopy. But in the meantime, finding out your defiencies and starting to supplement them will get you on the way to healthier bones and body.
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#5 guest134

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Posted 22 January 2013 - 06:54 PM

With numbers that high Celiac is likely. My G.I was telling me that asymptomatics are the highest risk group for complications since they will often doubt diagnosis and not want to stop gluten consumption without the classical symptoms. He told me a story about an old client who was referred due to early onset osteoporosis and weight loss, nothing classical. Since the guy was pretty much asymptomatic he would constantly cheat and consume gluten, on a follow up endoscopic procedure they found t cell lymphoma, the man has passed away.

I know how much it stinks to be told you can't consume gluten when you have little symptoms but you have to. If the biopsy finds the damage and you are diagnosed you MUST stop all consumption so you don't end up like my GI's other patient. Please also be aware that many people who thought they were asymptomatic notice a huge improvement of well being with both physical and mental symptoms vanishing, being more alert, energetic etc... I completely understand how much it sucks and how dumbfounding it can be, we are here for you if you need any support.
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#6 EstherRB

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Posted 22 January 2013 - 08:47 PM

Vitamin B-12, D3 and Calcium all within normal ranges. And get this my cholesterol is 140, triglyceride 55, LDL 87, pretty good eh? It's funny but not-I only eat gluten (Mom's a great baker) when I'm home for Christmas and the Christmas Eve tradition of the baccala...and the baked stuff shrimp and spaghetti with clam sauce. Back on the west coast, no pasta or bread or cookies in my kitchen. No frozen food in the freezer. I swim sometimes 1.5 hours a day 5-7 days a week. The numbers have scared me $%^^less. And since I have been back east, my joints are achy and it's not from the wind chill and shoveling Mom's driveway. Might be that dough boy and banana chocolate chunk muffin I had 1.5 weeks ago before the blood results came in. One doctor did prescribe Fosamax. Haven't filled that prescription yet because I read one of the rare side effects is lymphoma, so like why double my odds...and it should be noted I come from a long line on both sides of the family who are the Rare Side Effect when it comes to prescription meds. It can always be worse: I have a 38 year old friend with brain cancer and she has a 2 year old son. I was able to beg my way into an appointment with a gastro guy next Monday. My health insurance doesn't cover sedation for an endoscope (out of pocket 750-1,000.00); gonna try to work the angle that I also have TMJ (acquired that from filling out my first college application). Yeah, I'm a mess. But I keep it all in. You'd never know sitting across from me at dinner. LOL! I read somewhere that Cadbury Chocolate is gluten-free. It's the best damn chocolate in the world! I appreciate the replies...and to Takala who knew that my homeland of Italia (I've never been) was so evolved!?!
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#7 nvsmom

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Posted 23 January 2013 - 08:14 AM

Vitamin B-12, D3 and Calcium all within normal ranges. And get this my cholesterol is 140, triglyceride 55, LDL 87, pretty good eh? It's funny but not-I only eat gluten (Mom's a great baker) when I'm home for Christmas and the Christmas Eve tradition of the baccala...and the baked stuff shrimp and spaghetti with clam sauce. Back on the west coast, no pasta or bread or cookies in my kitchen. No frozen food in the freezer. I swim sometimes 1.5 hours a day 5-7 days a week. The numbers have scared me $%^^less. And since I have been back east, my joints are achy and it's not from the wind chill and shoveling Mom's driveway. Might be that dough boy and banana chocolate chunk muffin I had 1.5 weeks ago before the blood results came in. One doctor did prescribe Fosamax. Haven't filled that prescription yet because I read one of the rare side effects is lymphoma, so like why double my odds...and it should be noted I come from a long line on both sides of the family who are the Rare Side Effect when it comes to prescription meds. It can always be worse: I have a 38 year old friend with brain cancer and she has a 2 year old son. I was able to beg my way into an appointment with a gastro guy next Monday. My health insurance doesn't cover sedation for an endoscope (out of pocket 750-1,000.00); gonna try to work the angle that I also have TMJ (acquired that from filling out my first college application). Yeah, I'm a mess. But I keep it all in. You'd never know sitting across from me at dinner. LOL! I read somewhere that Cadbury Chocolate is gluten-free. It's the best damn chocolate in the world! I appreciate the replies...and to Takala who knew that my homeland of Italia (I've never been) was so evolved!?!

Your numbers and symptoms are very similar to mine, except I got stomach aches too; otherwise the joint pain, bloating, and menstral issues can often be attributed to celiac... my headaches and thinning hair were linked too. The only symptom you have that I don't is problems with the TMJ but there are others around here with jaw pain too.

My celiac tests werealso high,and my vitamins were all normal (except B12 which exceeded the range), and my cholesterol levels were all low or below range... In fact I just posted in Related Disorders about that because low cholesterol (which is caused by diseases like celiac) is actually related to vascular diseases like stroke; there's even a name for really low cholesterol: hypocholesterolemia. I don't think we're actually doing anything right to get those low numbers (my tri is 39, HDL is 65 and LDL is 83), we just don't absorb fats well. Go figure. :rolleyes:

Good luck with the gluten-free diet. I too doubt you need an endoscopy. There is a chance they could miss the damaged areas if it is patchy, and then you might find it even harder to adhere to the diet. At this point, I think you should consider the biopsy as just a confirmation of what the blood tests already told you, you have celiac. :(

Best of luck with the gluten-free diet, it sounds like you won't have to change too much so I hope it goes smoothly for you.
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#8 EstherRB

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Posted 23 January 2013 - 09:02 AM

Jaw pain? Damn. Another symptom. I just thought it was from years of improper brushing and receding gums and from clenching my teeth. I've been sleeping with a mouthguard since I was 18, tres attractive, but necessary.

No stomach aches though. Had a bout of weight gain (I'm one of those people you hate from high school: I've only gained about 20 lbs since graduation and have always had the tendency to lose weight from stress or as one internist said to me I can actually cannibalize myself) and constipation, but that's no longer an issue for the time being. Yes, Takala it does appear that I'm just checking off the symptoms.

As for the endoscope...years ago my brother had one for what his doc thought was a sarcoid. Came back inconclusive=they missed the target. His doc was quite the Nazi during the procedure. My bro was completely awake, barely sedated, not even a Valium. The Dark Ages of Medicine (going back to 2001).

New year, new diet.
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