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Egd Or Not? Help?

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key Contributor
key
Posted

Ok, now I am stressed and don't know what to do. I saw the GI doctor again today. I had blood tests about 6 months ago and they came back borderline celiac. My son has it too. Plus I had been gluten free for 5 weeks when I had that blood work done. I felt horrible before going gluten free. I had bruising, weight loss, constipation alternating with diarhea, belching, heart burn, chronic yeast infections for like six years, no appetite all the time, anxiety, depression, bone pain.

Well, I went back to the doctor, because I have had the worst bone pain for about two months again. I know in my mind i have this, because I cheated a few times in the last six months and got really sick. Mainly nausea, anxiety and bowel issues, plus bone pain. I just wanted to be sure I wasn't anemic again or having vitamin deficiencies, etc. I went to PF Chang's last week and got gluten there. i hate to be sick to my stomach(I am sure I am not the only one here, but I can't stand to heave)! Well, I took pepto bismol, dramamine and thought I would die anyway. I swore I would be so careful from now on. Well, now he wants to do the EGD and have me eat gluten for just a week. I can't bring myself to do it. I wouldn't mind knowing if any damage is there or the degree, but I don't want to go through what happens when I eat gluten. He just wants to know for sure he says, even though he admits that the test may not show anything because of only eating gluten for a week before the test. I know it is a personal decision. He wants to be sure that the bone pain is from celiac. Anyway, he did check my thyroid and did iron levels and a CBC. I really like him, but I just can't eat gluten again. I have also had two kids with birth defects and I some how think this is from being malnourished and not knowing it. I was anemic in high school too. I have always had stomach issues for years, but didn't know about celiac. I feel so much better on the diet, but I want to find out why my legs hurt all the time. Plus I have been getting every cold, virus that goes around lately. I exercise regularly. I just got rid of my wheat shampoo too. Plus I feed my kids gluten all the time. The problem is when talking about this with my mom, she says I should be tested to know for sure. Why would you want to be on this diet for no reason, etc. I had an underlying nausea all the time before.

I think if my blood tests before showed some kind of damage that gluten isn't ever going to be good for me. I am worried if my mom finds out or even my husband that the biopsy is negative they won't support me on this diet. It is already hard enough. I always feel as if I am crazy and people think I just made it up. Why on GOd's green earth would anyone want to stay on it for the fun of it?? Believe me, if I didn't get really sick with eating gluten, I would probably not stay on the diet. The bone pain concerns me though, and I want it to go away.

Thanks for listening. Any advice would be much appreciated.

Monica

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jerseyangel Proficient
jerseyangel
Posted

Monica, If it were me, I wouldn't do it. I don't think that 1 week back on gluten will show damage after 6+ months gluten-free. Your blood tests were positive, you feel much better on the gluten-free diet--I think you have your answer right there. That would be proof enough for me and should satisfy your family, too. I'm sure they see the improvement so far. I would stay 100% gluten-free--you just got rid of the wheat containing shampoo--maybe there are other ways gluten is sneaking in? Some things take longer to resolve--after 6 months, I still have a lot of neck pain. I just don't get how the Dr. hopes to "find the cause of your pain" by preforming a test that he knows will come out negative.

key Contributor
key
Posted
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Thanks for offering your opinion. It is strange when they know that doing the biopsy is probably going to be negative. I would be gluten free whether i had it done or not. My husband is a physician and he is understanding and supportive. He too thinks it is a bit odd to do the biopsy.

I think my problem is that I have been gluttened so many times in the past month. I just wanted to really check my bone health more then have a biopsy done. That wasn't what I wanted at all. I am glad he did a followup with my blood work and he did agree that with celiac you can have a lowered immune system and explained why I would have bone pain from ingesting gluten. He just said I didn't have classic celiac disease, but then 5 months ago he said it appeared that I was borderline celiac from my blood work. I had two abnormals on the tests. He said that being gluten free for 5 weeks would affect it.

I have been stupid though and have cheated a couple of times. Mainly because my mom goes on and on about how it is all in my head! GRRRR!! I think she has it too! I think she doesn't want to know. There is just really no one that understands how hard this is and I never eat out. Sometimes I feel isolated and it has really changed my whole life. At PF Changs, I had a wonderful experience once, so I went back with my husband. I am vegetarian and accidentally ordered the lettuce wraps gluten free, but forgot to say with tofu instead of chicken. So when they brought them out they were wrong and I had to send them back. Then when they came back, I didn't ask if they were gluten free and I think they had just changed them from chicken to the regular. THey didn't look the same as the one's I had had the last time. THey had water chestnuts, etc. the last time. I was so hungry I forgot to ask them, but soon regretted that decision. I got really anxious and I couldn't focus on the conversation. I felt very spacey! THen I kept belching and within 30 minutes I felt horribly nauseaus. I think because I hadn't eaten much all day, that it hit me twice as fast and worse then normal.

SOrry, that was long, but I am SO terrified of eating gluten again.

Anyone else ever have this happen at PF Changs? Usually I am so happy with them, because they are so helpful, but I think because my food got sent back, they forgot to mention it was meat and gluten free.

MOnica

Matilda Enthusiast
Matilda
Posted

..

key Contributor
key
Posted
  • Author

Isn't it crazy we need to provide proof of this disease. It just dawned on me how silly that sounds. I guess that most people just feel uncomfortable with us having this. Ignorance doesn't help at all! People have asked me how I have made it to thirty with this and didn't know it. Well, I have always felt that I had something going on that wasn't normal. Especially since High school. Anyway, i have decided not to have it done. It isn't going to change anything for me. I am scared to death to eat gluten "for the fun of it"! I know that it makes me sick and I am happy with that answer. My doctor just wants to make me believe it and not cheat if that is an issue. At first it sort of was. Like every six weeks I would forget how sick it made me and test myself, but after the last episode of accidentally getting it. Well, now I am more convinced then ever.

I did think of having the biopsy done just to see if I have healed. I am sure there wouldn't be much damage. I have really been vigilant, but I guess even once every two months of getting it accidentally isn't good. My husband says that if it isn't going to change anything for me, then why do it.

THanks for the replies though.

MOnica

CMCM Rising Star
CMCM
Posted
Isn't it crazy we need to provide proof of this disease. It just dawned on me how silly that sounds. I guess that most people just feel uncomfortable with us having this. Ignorance doesn't help at all! People have asked me how I have made it to thirty with this and didn't know it. Well, I have always felt that I had something going on that wasn't normal. Especially since High school. Anyway, i have decided not to have it done. It isn't going to change anything for me. I am scared to death to eat gluten "for the fun of it"! I know that it makes me sick and I am happy with that answer. My doctor just wants to make me believe it and not cheat if that is an issue. At first it sort of was. Like every six weeks I would forget how sick it made me and test myself, but after the last episode of accidentally getting it. Well, now I am more convinced then ever.

I did think of having the biopsy done just to see if I have healed. I am sure there wouldn't be much damage. I have really been vigilant, but I guess even once every two months of getting it accidentally isn't good. My husband says that if it isn't going to change anything for me, then why do it.

THanks for the replies though.

MOnica

How about that Enterolab stool test?

danikali Enthusiast
danikali
Posted
Ok, now I am stressed and don't know what to do. I saw the GI doctor again today. I had blood tests about 6 months ago and they came back borderline celiac. My son has it too. Plus I had been gluten free for 5 weeks when I had that blood work done. I felt horrible before going gluten free. I had bruising, weight loss, constipation alternating with diarhea, belching, heart burn, chronic yeast infections for like six years, no appetite all the time, anxiety, depression, bone pain.

Well, I went back to the doctor, because I have had the worst bone pain for about two months again. I know in my mind i have this, because I cheated a few times in the last six months and got really sick. Mainly nausea, anxiety and bowel issues, plus bone pain. I just wanted to be sure I wasn't anemic again or having vitamin deficiencies, etc. I went to PF Chang's last week and got gluten there. i hate to be sick to my stomach(I am sure I am not the only one here, but I can't stand to heave)! Well, I took pepto bismol, dramamine and thought I would die anyway. I swore I would be so careful from now on. Well, now he wants to do the EGD and have me eat gluten for just a week. I can't bring myself to do it. I wouldn't mind knowing if any damage is there or the degree, but I don't want to go through what happens when I eat gluten. He just wants to know for sure he says, even though he admits that the test may not show anything because of only eating gluten for a week before the test. I know it is a personal decision. He wants to be sure that the bone pain is from celiac. Anyway, he did check my thyroid and did iron levels and a CBC. I really like him, but I just can't eat gluten again. I have also had two kids with birth defects and I some how think this is from being malnourished and not knowing it. I was anemic in high school too. I have always had stomach issues for years, but didn't know about celiac. I feel so much better on the diet, but I want to find out why my legs hurt all the time. Plus I have been getting every cold, virus that goes around lately. I exercise regularly. I just got rid of my wheat shampoo too. Plus I feed my kids gluten all the time. The problem is when talking about this with my mom, she says I should be tested to know for sure. Why would you want to be on this diet for no reason, etc. I had an underlying nausea all the time before.

I think if my blood tests before showed some kind of damage that gluten isn't ever going to be good for me. I am worried if my mom finds out or even my husband that the biopsy is negative they won't support me on this diet. It is already hard enough. I always feel as if I am crazy and people think I just made it up. Why on GOd's green earth would anyone want to stay on it for the fun of it?? Believe me, if I didn't get really sick with eating gluten, I would probably not stay on the diet. The bone pain concerns me though, and I want it to go away.

Thanks for listening. Any advice would be much appreciated.

Monica

OH MY GOD YOU SOUND JUST LIKE ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I just got through with all of the testing too, after being off and on and off and on gluten since March! Well, the blood came back borderline like you and the biopsy, NOTHING! Plus I was off of gluten for the week before and of the biopsy! I also did enterolab and got a positive IgA test, so that is enough for me! No more testing! I am finally just getting over the prep. alone, for this dumb colonoscopy/endoscopy testing!

I also had bruise ALL OVER my legs when on gluten. Off of it, THE BRUISES ARE GONE!!! I have all the symptoms you do! Constipation, bad bad bone pain (knee especially), joint, muscle, and it's mostly in my legs!!!! Especially when I lay down or sit for too long! Every night when I go to bed, I get achy! Well, I've been off of gluten for about 2 weeks now (but like I said, the prep. WIPED ME OUT) and all of my symptoms are finally starting to subside again.

I would say, screw the biopsy! Screw glutlen! hhaha seriously though! Your test was borderline, how about try enterolab? You don't have to eat gluten for that!!! And if your family doesn't support you (as I have just learned), WHO CARES! They will eventually see how healthy you are becoming and all of this dumb testing will be forgotten! My family (and me for a while) really started thinking I was crazy until I got enterolab's results and went off gluten again, FOR GOOD, and see how my stomach is already OBVIOUSLY healing. I still don't "go" everyday, but I assume that will be the last symptom to go. But I am NEVER bloated anymore, no more cramps, and no more bad gas! My stomach used to get so hard I couldn't move. Now, it's totally normal and I feel skinny again!! (Even though my weight hasn't really changed, but you know what you have a bloated potbelly and you're whole body could be bones but your pants won't fit!)

Anyway, if you want to do the biopsy, I think it might be pointless because you might have to eat gluten for more than a week. Honestly, try enterolab.:

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And STAY off gluten, you KNOW it's not good for you. YOU AREN'T CRAZY! :D

keep us posted!

-Danielle

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key Contributor
key
Posted
  • Author

Danielle,

THanks for your reply. I am glad to know I am not alone. The bone pain is the worst for me right now. Like you though, I had chronic yeast, bruises(gone now), horrible pain in my stomach, heartburn, gas, bloating and you name it. All gone now, but i think I am suffering with the bone pain from being glutened majorly twice this month. I can't stand to eat the gluten, so I think I am going to cancel the test. I am a big scaredy cat too. It won't make a difference either way. I know I can't eat gluten. For me blood tests borderline (off gluten for 5 weeks before) and positive dietary change is enough. Plus my son has celiac disease.

It is nice to know I am not the only one with bone pain. I seriously feel as if I am dying of cancer! I did have this before going gluten free though and I think it is the exposure to gluten that has brought it back. THe doctor did tell me that eating gluten sets up and inflammatory response, so at least I can understand why this would happen.

Take care. Hope you are feeling a 100% soon!

Monica

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