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Old 08-08-2010, 05:03 PM   #1
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Diagnosed with celiacs

I had a routine colonoscopy and endoscopy at age 48 and was told I had Celiacs disease. They did some followup blood work to confirm. It is very difficult to follow the diet because I had no symptoms except anemia (again which I had no symptoms) so basically I was feeling great but have celiacs. Is there others out there with the same story finding it hard to totally change the diet when there were no adverse affects anyway. Also what if I don't change my diet

 
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Old 08-19-2010, 05:27 PM   #2
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Re: Diagnosed with celiacs

Hi- I was just dx'd by the blood test last week and have to have the endoscopy next week to confirm. I am kind of similar to you- my symptoms were totally not GI related- I have really bad left-sided rib cage pain that sometimes wraps around the back and left underarm pain. I would have never expected a digestive disorder. In fact, I have been to so many Dr's to try to find out what is causing the pain, but never once did I even think about going to a GI Dr. I went to a Rheumatologist and she did some random blood testing and it came back positive and I was shocked- I had never really even heard of celiac.

I was anemic too and really never found out why- it would come and go depending on my iron pill consumption. There are a lot of other non GI things associated with celiac apparently. I have been doing a lot of reading up on it. It can cause some mental issues- like brain fog, dizziness, etc. Did they say that there was a lot of damage to your small intestine? I am guessing if they found it on the endoscopy there must have been some destruction? Do autoimmune diseases run in your family?

It can lead to GI cancers including lymphoma if you don't stick to the GF diet- that scares me so much. I think I read that if you aren't following the GF diet your chances for intestinal lymphoma are 80X greater than the general population.

Good Luck,
Sara

 
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Old 08-19-2010, 08:07 PM   #3
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Re: Diagnosed with celiacs

I have followed the diet strictly for 2 weeks which has not been too bad at all. I have only ever been to the MD once a year for the physical. I just requested a colonoscopy because my great insurance is not going to be offered next year and since it turned out on my routine bloodwork I was anemic they just went ahead and did the endoscopy while I was out of it. My blood level (the antibody for celiac) is "alarmingly high" according to my MD. So really if I hadn't requested it who knows when I would have been diagnosed and how much damage has been done so I am blessed. After a great deal of internet and journal reading I have a healthy respect for the disease and the need to be strict on my diet. My house is gluten free (easy I live alone) and my boyfriend and friends are very supportive. I guess I should be thankful it was found. It is just hard when I have felt good, normal weight but now I will look forward to feeling even better. Good luck on your endoscopy. It was a breeze for me

 
Old 08-19-2010, 08:26 PM   #4
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Re: Diagnosed with celiacs

I was reading your past post and saw something interesting. You said you got nauseous when stressed. That is something I experienced. I meditate alot and don't really get stressed alot but when I did I would always get nauseous

 
Old 08-20-2010, 10:37 AM   #5
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Re: Diagnosed with celiacs

Yes! I get nausea when I am nervous and stressed! Actually, like right now! I had my consultation with the GI Dr today and have the endo next week and I am really nauseous now because I am stressed about the procedure. i am glad you said it was a breeze though! The Dr said I won't remember anything and it's not a big deal.

That is interesting they found out you had it and your results were "alarmingly high". How crazy that you didn't have any symptoms or anything! That is kind of like me- aside from the left sided rib cage pain and the unexplained anemia I really didn't have symptoms either.

I work out all the time and usually felt pretty good. So odd!

I am going to request my blood results, I want to see how high my antibody was.

 
Old 08-20-2010, 09:09 PM   #6
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Re: Diagnosed with celiacs

I had a colonoscopy and when I went in they said if they did not find the source of anemia did I want them to go ahead and have an endoscopy which I said of course. I remember being wheeled in, then I remember them telling me they needed to do the endoscopy to which I said "don't use the same tube" and the next thing I remember is being in the elevator leaving the building with my boyfriend. I do not remember the MD talking to me getting dressed etc . We went out shopping (he driving of course) then to a late lunch and I never had any pain, discomfort after at all.

 
Old 08-21-2010, 03:17 PM   #7
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Re: Diagnosed with celiacs

Hi ladies - same with me - NO GI symptoms for me. In fact, they thought I had lymphoma! I guess Celiac Disease is better, but the diet has sucked alot, because now I have alot of GI symptoms. Now I'm not sure if CD is all that is going on. Going back to dr. tomorrow to check blood and schedule an MRI. I have only been on the gluten free lifestyle for 4 months and you would think I would be seeing improvements. Although, when you have no GI symptoms to begin with what are improvements???? Bloating and stomach noises are not improvements in my book. But if I don't eat GF then my chances of lymphoma and other horrible diseases are so much higher. And since my lymph nodes are already enlarged and angry I don't want to **** them off anymore, huh?

Hope your endoscopy goes well. I was so worried at first but it was a piece of cake. (gluten free of course!)

 
Old 08-22-2010, 04:49 AM   #8
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Re: Diagnosed with celiacs

It can take two years for intestinal damage to heal and longer for the nutritional deficiencies/damage. (esp vitamin D) Any celiac 30+ should have a DEXA scan to look for osteopenia (early onset osteoporosis - guys too!)

Many celiacs report developing a gastrointestinal response to gluten after going gluten free. My doc said they didn't know why that is but he thought it might be a "poison reaction", that after being gluten free for awhile, our bodies actually see gluten as a poison - and does everything in it's power to get it out of the body. And I do mean everything.

The effects of my last accidental glutening (I've been GF five years) lasted three days; nausea, vomiting, diarrhea, fever, night sweats, headache, muscle spasms, the overall exhaustion and brain fog lasted a week. I drank maybe half a glass of chocolate milk before realizing I hadn't checked the ingredients. Wheat malt and barley malt were listed third and forth.

Last edited by AuntieLeela; 08-22-2010 at 04:50 AM.

 
Old 08-22-2010, 05:09 PM   #9
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Re: Diagnosed with celiacs

Quote:
Originally Posted by IamSAHM View Post
Hi ladies - same with me - NO GI symptoms for me. In fact, they thought I had lymphoma! I guess Celiac Disease is better, but the diet has sucked alot, because now I have alot of GI symptoms. Now I'm not sure if CD is all that is going on. Going back to dr. tomorrow to check blood and schedule an MRI. I have only been on the gluten free lifestyle for 4 months and you would think I would be seeing improvements. Although, when you have no GI symptoms to begin with what are improvements???? Bloating and stomach noises are not improvements in my book. But if I don't eat GF then my chances of lymphoma and other horrible diseases are so much higher. And since my lymph nodes are already enlarged and angry I don't want to **** them off anymore, huh?

Hope your endoscopy goes well. I was so worried at first but it was a piece of cake. (gluten free of course!)
That is very strange you mention the lymph node enlargement. Back in the spring I had 2 axillary nodes enlarged- 2.1 and 1.8cm's. They were very painful too. I had a follow up ultrasound and they went down to normal, but I still have no idea why they were enlarged since I had blood work done to rule out mono, lyme, etc. I wonder if it was celiac related. Where are your enlarged nodes?

Thanks about the endoscopy! I am kind of nervous about it!

 
Old 08-22-2010, 05:11 PM   #10
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Re: Diagnosed with celiacs

Quote:
Originally Posted by AuntieLeela View Post
It can take two years for intestinal damage to heal and longer for the nutritional deficiencies/damage. (esp vitamin D) Any celiac 30+ should have a DEXA scan to look for osteopenia (early onset osteoporosis - guys too!)

Many celiacs report developing a gastrointestinal response to gluten after going gluten free. My doc said they didn't know why that is but he thought it might be a "poison reaction", that after being gluten free for awhile, our bodies actually see gluten as a poison - and does everything in it's power to get it out of the body. And I do mean everything.

The effects of my last accidental glutening (I've been GF five years) lasted three days; nausea, vomiting, diarrhea, fever, night sweats, headache, muscle spasms, the overall exhaustion and brain fog lasted a week. I drank maybe half a glass of chocolate milk before realizing I hadn't checked the ingredients. Wheat malt and barley malt were listed third and forth.
Thx! Do you think if I had osteopenia my calcium levels would be low? Last time I had my blood work done my calcium was normal.

That is interesting about the gluten poisoning after not eating it for so long. I really don't think the diet will be hard to stick to- last night I went to my fave pizza place and they are not offereing GF pizza there! I was so happy!

 
Old 08-22-2010, 06:06 PM   #11
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Re: Diagnosed with celiacs

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Originally Posted by Stabevrian View Post
That is very strange you mention the lymph node enlargement. Back in the spring I had 2 axillary nodes enlarged- 2.1 and 1.8cm's. They were very painful too. I had a follow up ultrasound and they went down to normal, but I still have no idea why they were enlarged since I had blood work done to rule out mono, lyme, etc. I wonder if it was celiac related. Where are your enlarged nodes?

Thanks about the endoscopy! I am kind of nervous about it!

My lymph nodes are in my abdomen - mesenteric lymph nodes. There is also intestinal wall thickening in the same area and this area also lit up like a Christmas tree on my PET scan, indicated metabolic activity - not good. Hopefully will have this follow up MRI this coming week to see if gluten free diet has decreased swelling and wall thickening. I freak out about lymphoma now since (a) I was already diagnosed with it and put my family through h*ll for one month and (b) my lymph nodes react so quickly and there is a strong link between celiacs and lymphoma. I hope it is an unfounded freak, but I sometimes can't help myself. If your enlarged lymph nodes are in a place you can feel then watch them and give your doctor a call anytime they swell. Also, if you notice that you are having gluten-like symptoms and you are not responding to the diet, please call your doctor and let them know.

My neighbor just had an upper GI done on Friday and she is the type that faints at the sign of a needle. She was very nervous. But she came through it with flying colors and even felt fine afterwards. Hope yours is the same - let us know how it turns out!

 
Old 08-23-2010, 08:39 AM   #12
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Re: Diagnosed with celiacs

Quote:
Originally Posted by IamSAHM View Post
My lymph nodes are in my abdomen - mesenteric lymph nodes. There is also intestinal wall thickening in the same area and this area also lit up like a Christmas tree on my PET scan, indicated metabolic activity - not good. Hopefully will have this follow up MRI this coming week to see if gluten free diet has decreased swelling and wall thickening. I freak out about lymphoma now since (a) I was already diagnosed with it and put my family through h*ll for one month and (b) my lymph nodes react so quickly and there is a strong link between celiacs and lymphoma. I hope it is an unfounded freak, but I sometimes can't help myself. If your enlarged lymph nodes are in a place you can feel then watch them and give your doctor a call anytime they swell. Also, if you notice that you are having gluten-like symptoms and you are not responding to the diet, please call your doctor and let them know.

My neighbor just had an upper GI done on Friday and she is the type that faints at the sign of a needle. She was very nervous. But she came through it with flying colors and even felt fine afterwards. Hope yours is the same - let us know how it turns out!

Good luck with your MRI. Are your enlarged nodes painful, can you feel mesenteric ones or are they too far inside? It was weird, b/c my enlarged axillary nodes were deep in and I couldn't feel them. I was just in a lot of pain.

So, did they originally mis-diagnose you with lymphoma?

 
Old 08-23-2010, 11:55 AM   #13
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Re: Diagnosed with celiacs

I had no clue my lymph nodes and intestinal wall were enlarged. Weren't painful and can't feel them.
Yes, the told me in March I had lymphoma. I went about a month getting ready for chemo, had lots of test and surgery. Had the surgery and they biopsied the nodes and there was no cancer. Hooray!!! What a surprise - but a good one.

 
Old 08-23-2010, 12:05 PM   #14
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Re: Diagnosed with celiacs

Quote:
Originally Posted by IamSAHM View Post
I had no clue my lymph nodes and intestinal wall were enlarged. Weren't painful and can't feel them.
Yes, the told me in March I had lymphoma. I went about a month getting ready for chemo, had lots of test and surgery. Had the surgery and they biopsied the nodes and there was no cancer. Hooray!!! What a surprise - but a good one.
Wow, yes, that is a very pleasant surprise. Maybe the enlarged nodes have something to do with celiac. I mean, mine in my left underarm were enlarged for 5 mos, I was at the point of having them biopsied, but then at the last ultrasound- they were completely back to normal size and my Dr's could not find anything wrong- they thought maybe Lyme or Mono, but nothing.

 
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