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#1 MomGoneRunning

 
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Posted 05 March 2012 - 07:55 PM

My GI just gave me a ring and said that the pathology results came back as normal, not indicative of Celiac Sprue, but that my "issue" is most likely IBS. :angry: I don't know if this should make me happy, or if I should be more frustrated.... Part of me says "Good! You don't have an autoimmune disease! That's good Jess!".... But the other half of me wants to cry. :( My body is not right and I have exhausted all of my means to "fix" it. Is it possible that maybe my villi are not reflecting any damage yet due to the fact that I've only had the symptoms for 7ish months? I would assume that would be irrelevant, damage will be done with or without symptoms. I am so frustrated. I don't know what else to do to help myself, other than going gluten free and seeing how I feel after that. I'm sorry this is such a whiny post. But I know many of you have possibly felt the same way.
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2012- currently awaiting a confirmed diagnosis of Celiac Sprue.

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#2 mushroom

 
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Posted 05 March 2012 - 08:06 PM

I'm sorry you came up negative, and it's quite okay to whine here. We do it all the time when we are not wining!! Welcome to the board and the frustration of no diagnosis.

Yes, the next thing to do is to pretend that your diagnosis was positive and to go strictly gluten free for a good three months. You may be what some refer to as "merely" gluten intolerant, or you may not have built up to full-blown symptoms yet. Either way, give the diet a good trial, and chances are you will feel a lott better, diagnosis or no
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 Tusofsky

 
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Posted 05 March 2012 - 08:41 PM

I know how you feel. It's one of those things where I'm not sure if I should say "I'm sorry :(" or "Yay!" because, urg. IBS is more of a symptom, it means something is causing it. Did you doctor not give you any suggestions or did they just leave you with "Probably IBS"?

I'd take Mushrooms suggestion (It's my plan if I hear something similar) on testing how gluten free has an effect on you, if you get better.

Hope you do! Soon!
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#4 rosetapper23

 
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Posted 05 March 2012 - 08:57 PM

Okay, so you're talking about your endoscopy, right? How about your bloodwork? Was it positive for celiac? If so, disregard the biopsy--you have celiac. I won't expand on this unless you say that you didn't have bloodwork or it was negative.

Can you please give us the whole story? So....don't be too sad just yet, okay?
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#5 MomGoneRunning

 
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Posted 05 March 2012 - 09:27 PM

Yes, I am talking about my upper endoscopy with small bowel biopsies. Apparently my GI only took two as well. *scratches head* I thought he would take more, considering. But I don't feel as though he was really at all concerned with helping me to begin with.

Hum, whole story? Symptoms and all? Here is a link to my very first post, it lists my symptoms and gives you a back story....
http://www.celiac.co...930#entry768930

My TTG IgA/IgG results is what is kind of throwing a wrench in everything. No one really knows what to make of it because I have yet to get any answers as to why a IgA would be normal with a IgG a definitive positive. Does that answer your questions? I'm sorry I wasn't very specific in my initial post. My mind is in a hundred places at once and I'm just frustrated. What is your personal opinion of my TTG IgA/IgG results?
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2012- currently awaiting a confirmed diagnosis of Celiac Sprue.

#6 Skylark

 
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Posted 05 March 2012 - 10:44 PM

You still might be celiac. Two biopsies isn't enough, as you already know, especially if you're early on developing it. Damage is typically patchy. Also did you see the biopsy report? Did it mention increased intraepithelial lymphocytes or any abnormalities? Your doctor seems to not want to really consider celiac so he might have downplayed the early signs of it.

You're done with your testing so go off gluten. It's very likely to help you feel better.
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#7 mommida

 
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Posted 06 March 2012 - 08:25 AM

Get off the gluten and see if it helps. :)
New information is coming out about the "negative tested patients that improve on a gluten free diet". The medical community is taking another look. There has been too much of a positive improvement for too many patients. (It seems especially strong in nuerological affected individuals.)
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Michigan

#8 GottaSki

 
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Posted 06 March 2012 - 09:29 AM

I agree with others above -- completely remove gluten for a period of at least three months. Many have negative blood and/or endoscopy and improve when they remove gluten -- my kids and grands all did.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 MomGoneRunning

 
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Posted 07 March 2012 - 07:45 AM

Thank you all for your advice, opinions, and kind words!I am cleaning out my house as we speak of gluten and intend to see how I do myself off of gluten. It seems to be the most logical step to take next. Once again, thank you all for everything! :D
  • 0
2012- currently awaiting a confirmed diagnosis of Celiac Sprue.

#10 Cara in Boston

 
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Posted 07 March 2012 - 09:18 AM

Just wanted to share our experience because some is similar to yours.

Last year my son (6) with almost zero symptoms was tested for celiac disease. His blood tests came back weird. All IgA tests were perfectly normal (including total IgA), his Gliadin IgG and TTG IgG were both elevated. MD sent him to Pediatric GI for further testing. Since it looked like he may have celiac disease, I started learning about it and realized I had had many, many of the symptoms for the past 5 or 6 years - ever since I was pregnant with him! (pregnancy can be a trigger). I got tested too and my IgA levels were all very high.

Son's GI did genetic test and DGP tests . . .genetic test show LOW probability and agin, the IgA tests were fine, IgG were up. He concluded that son did NOT have celiac disease. (he told me I had read too many magazine articles . . .)

I went to adult GI and was told that based on my symptoms and blood tests that I DID have celiac disease. A biopsy was scheduled, not to confirm the diagnosis, but to have a starting point to monitor my healing.

At this time it just seemed weird that I would have it, but my son - who was tested first, didn't. So I took him to a Celiac Specialist and she was concerned about the IgG levels. She did a biopsy and found him to have extensive damage.

I had my biopsy and had NO DAMAGE AT ALL. My doctor then reversed his thinking and said I was fine. Probably IBS . . . maybe the original blood tests were wrong, etc. etc.

So now it is even weirder that I have the symptoms, I have a son with it, and I just have IBS? Really?


Anyway, we both went gluten-free and all my symptoms are GONE. Son doing great too. At follow up visit with my doctor, he "officially" diagnosed me with gluten intolerance. Whatever.

My son's doctor (celiac disease specialist) said that is a lot of hooey. Blood tests aren't elevated for no reason at all. She said I obviously have it and maybe just not long enough for damage to show. The biopsy can be wrong, especially if they don't do 7-10 samples.


So, I would think you have it - or at the very least, are gluten intolerant - based on your IgG test results. Go gluten free, be strict, and see if you don't feel better in a few weeks. Don't forget that you may feel worse at first (I did, son did not) but keep going. Give it a good 3 months and don't cheat. You will be very pleased with the changes you see.

Hope you are feeling better soon.

Cara
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#11 MomGoneRunning

 
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Posted 07 March 2012 - 11:09 AM

Wow. You poor thing! It's just not right to be dismissed by doctors as having "read too many magazine articles" or to just disregard you with out a good reason. I'm so glad you finally have things figured out for both you and you son. I really do feel like this is my problem. Its very hard though with out a Drs support, to sort of be disregarded as having read too much or just be plain crazy, like you said at the very least I am non-Celiac gluten intolerant.. I am a dietetic student and even my Community Nutrition professor says that to be "allergic to gluten" is just a fad, with the exception of actually having Celiac Sprue. Its frustrating. Thank you for sharing your story! It's comforting to know that I am not the only one out there who has had these sorts of "go-arounds" and then just be dismissed..... Thank you!

Just wanted to share our experience because some is similar to yours.

Last year my son (6) with almost zero symptoms was tested for celiac disease. His blood tests came back weird. All IgA tests were perfectly normal (including total IgA), his Gliadin IgG and TTG IgG were both elevated. MD sent him to Pediatric GI for further testing. Since it looked like he may have celiac disease, I started learning about it and realized I had had many, many of the symptoms for the past 5 or 6 years - ever since I was pregnant with him! (pregnancy can be a trigger). I got tested too and my IgA levels were all very high.

Son's GI did genetic test and DGP tests . . .genetic test show LOW probability and agin, the IgA tests were fine, IgG were up. He concluded that son did NOT have celiac disease. (he told me I had read too many magazine articles . . .)

I went to adult GI and was told that based on my symptoms and blood tests that I DID have celiac disease. A biopsy was scheduled, not to confirm the diagnosis, but to have a starting point to monitor my healing.

At this time it just seemed weird that I would have it, but my son - who was tested first, didn't. So I took him to a Celiac Specialist and she was concerned about the IgG levels. She did a biopsy and found him to have extensive damage.

I had my biopsy and had NO DAMAGE AT ALL. My doctor then reversed his thinking and said I was fine. Probably IBS . . . maybe the original blood tests were wrong, etc. etc.

So now it is even weirder that I have the symptoms, I have a son with it, and I just have IBS? Really?


Anyway, we both went gluten-free and all my symptoms are GONE. Son doing great too. At follow up visit with my doctor, he "officially" diagnosed me with gluten intolerance. Whatever.

My son's doctor (celiac disease specialist) said that is a lot of hooey. Blood tests aren't elevated for no reason at all. She said I obviously have it and maybe just not long enough for damage to show. The biopsy can be wrong, especially if they don't do 7-10 samples.


So, I would think you have it - or at the very least, are gluten intolerant - based on your IgG test results. Go gluten free, be strict, and see if you don't feel better in a few weeks. Don't forget that you may feel worse at first (I did, son did not) but keep going. Give it a good 3 months and don't cheat. You will be very pleased with the changes you see.

Hope you are feeling better soon.

Cara


  • 0
2012- currently awaiting a confirmed diagnosis of Celiac Sprue.

#12 mommida

 
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Posted 07 March 2012 - 12:04 PM

Just a headsup the "go rounds" just continue.

Like I said my daughter was diagnosed as "probable" Celiac at 17 months old. Elevated levels on the Celiac panel, positve for DQ2 and DQ8 celiac genes and was deemed to ill for the endoscopy. (as she was hospitalized for dehydration for 3days.)

When she was getting diagnosed with Eosinophilic Esophagitus (6 years old on a gluten free diet since she was 17 months old) no Celiac damage on the scope. Put on an elimination diet avoiding all top 8 allergens, glute free, and avoiding peas, food dyes, and perservitives. No Eosinophils, no celiac damage on the scope report. It was a very encouraging report, her EE could be controlled by avoiding food triggers!
Flash forward to present day events. She was having pain and coughing up food that had been stuck in her throat. In for another endoscopy. High levels off Eosinophils, damage to her stomach, but no cleiac damage. Well frickin DUH the child has not eaten gluten since she was 17 months old and is now 9 years old. The ped GI has taken away her "probable" Celiac diagnoses!!!??? (and diagnosed her as a NEW Eosinophilic Esophagitus case. (Apparently when she had the "clean scope" on the severe elimination diet he UN diagnosed the EE.)

He told me to feed her gluten!!!? I told him she would end up in the hospital AGAIN if Idid that and he is CRAZY!
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Michigan

#13 Bubba's Mom

 
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Posted 07 March 2012 - 01:30 PM

Just a headsup the "go rounds" just continue.

Like I said my daughter was diagnosed as "probable" Celiac at 17 months old. Elevated levels on the Celiac panel, positve for DQ2 and DQ8 celiac genes and was deemed to ill for the endoscopy. (as she was hospitalized for dehydration for 3days.)

When she was getting diagnosed with Eosinophilic Esophagitus (6 years old on a gluten free diet since she was 17 months old) no Celiac damage on the scope. Put on an elimination diet avoiding all top 8 allergens, glute free, and avoiding peas, food dyes, and perservitives. No Eosinophils, no celiac damage on the scope report. It was a very encouraging report, her EE could be controlled by avoiding food triggers!
Flash forward to present day events. She was having pain and coughing up food that had been stuck in her throat. In for another endoscopy. High levels off Eosinophils, damage to her stomach, but no cleiac damage. Well frickin DUH the child has not eaten gluten since she was 17 months old and is now 9 years old. The ped GI has taken away her "probable" Celiac diagnoses!!!??? (and diagnosed her as a NEW Eosinophilic Esophagitus case. (Apparently when she had the "clean scope" on the severe elimination diet he UN diagnosed the EE.)

He told me to feed her gluten!!!? I told him she would end up in the hospital AGAIN if Idid that and he is CRAZY!

How frustrating! :o I hope you can figure out what's triggering her symptoms. It seems like the Dr.s are NO help!
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#14 Takala

 
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Posted 07 March 2012 - 03:38 PM

Is this guy trying make sick patients, or cure them ? :huh: <_< :blink: :ph34r:
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#15 mushroom

 
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Posted 07 March 2012 - 04:23 PM

Patients?? They don't care about the health of their patients. They are in love with their damned tests!!!
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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