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5 1/2 Years Gluten-Free Now Microscopic Colitis Dx From Biopisy


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11 replies to this topic

#1 Judyin Philly

 
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Posted 28 January 2010 - 02:22 PM

I've been off line after our move from PA to CA for so long
I had 7 weeks 0f water 'd' and it's draining me to say the least
I prayer some of you will come on line and help me out
I just don't have the energy to do reasearch at this time

New Dr demanded colonoscopy and endoscope immediatly
many biops and found
ulcer in stomach
hiatial hernea
looking for chrons but found MC
will see him on Monday

he and last GI didn't think I have celiac b.c the
ttg of whar ever was not showig up

beyond discouraged and don't know how I'll ever get moved into this new home

Hoping some of you old timers will help me

Judy
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Judy in Southern CA

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#2 nikki-uk

 
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Posted 28 January 2010 - 02:35 PM

Judy, surely if you are actively gluten free your tTg will be low? :unsure:


Sorry to say I don't have any info on Microscopic colitis.... although I think there are a few board members with this also.
Hope they chime in soon

Take care :)
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It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki



Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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#3 jerseyangel

 
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Posted 28 January 2010 - 03:22 PM

Hi Judith :)

I think Nikki is right about the TTG--you've been gluten-free for so long now that any Celiac testing that is done on you would surely be negative. I had the Celiac Panel run last year (also new GI) and my TTG was at 3, which is negative (this was with me being gluten-free for over 3 years--which was expected). Same with any biopsies done of your small intestine--I would expect them to be completely negative for Celiac.

Since my Celiac diagnosis, I've also been diagnosed with Hiatal Hernia and MC. The Hernia was sort of unexpected--I did have some reflux and I get hiccups at the drop of a hat--but I'm glad to know anyway since it explains some symptoms that were not particularly bothersome but there nonetheless.

Luckily, the first treatment she put me on for the MC seemed to knock it into remission. It isn't curable, but remission can last for months or even years--and when it does reoccur we can just get back on whatever meds that worked for us. It can take some tweaking to figure out which meds are going to do the trick--it's individual. The GI I had used different levels of treatment and progressed (or not) depending on the patient's response.

I know it's a terribly stressful time for you right now :( I am relieved, however, that they have finally figured out why you still have ongoing problems. Now you can begin to deal with it, and to feel better--and when you're not having diarrhea and having all of your nutrients going right through you, you are bound to have the energy to deal with the other stuff. My doctor told me that MC is associated with Celiac and that along with testing for Refractory Sprue when a Celiac patient has ongoing issues with diarrhea, she suspects MC.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#4 Takala

 
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Posted 28 January 2010 - 06:16 PM

After 5 and a half years of being off of gluten consumption, a celiac or gluten intolerant person will FLUNK the blood tests if they have been adhering faithfully to the gluten free diet- this isn't rocket science, yet we read here almost daily of a patient/doctor interaction whereby the doctor doesn't seem to realize this. (and even I have had this happen.)

Earth to Medical Profession. A patient who hasn't eaten gluten for years will not have gluten antibodies in their blood. This negative blood test does NOT mean you just proved they don't have Celiac or Gluten Intolerance.

http://en.wikipedia....ransglutaminase
Tissue transglutaminase (abbreviated as TG2 or tTG) is an enzyme (EC 2.3.2.13) of the transglutaminase family.
Tissue transglutaminase is best known for its link with coeliac disease. Anti-transglutaminase antibodies (ATA) result in a form of gluten sensitivity in which a cellular response to Triticeae glutens that are crosslinked to tTG are able to stimulate transglutaminase specific B-cell responses that eventually result in the production of ATA IgA and IgG.[6]

In other words, if the triticeae glutens (wheat proteins) are not there for the B-cells to respond to, there shouldn't be a reaction to it....

Don't expect doctors to know this, I guess, but do tell them when they attempt to un diagnose you.
______

links for information about ASACOL, which is an anti inflammatory used in the treatment of inflammatory bowel disease

quote
" The active ingredient in Asacol, mesalamine (5-aminosalicylic acid, also referred to as 5-ASA), is the major active component of sulfasalazine for the treatment of inflammatory bowel disease. The available evidence suggests that mesalamine has a topical anti-inflammatory effect on the colon, where it inhibits prostaglandin and leukotriene synthesis.


Contra-Indications: In patients with a history of sensitivity to salicylates; existing gastric or duodenal ulcer; urinary tract obstruction; and in infants under 2 years of age. tag_WarningWarnings

possible side effects include:
Allergic: An acute hypersensitivity reaction characterized by cramping, abdominal pain, bloody diarrhea and occasionally by fever, headache, malaise, pruritus, rash and conjunctivitis has been infrequently reported to occur shortly after the initiation of mesalamine. If these symptoms occur, therapy should be discontinued. Symptoms usually abate promptly after discontinuation. "

read more here:

http://www.rxmed.com...l Monographs- A)/ASACOL.html

____

wikipedia Asocal redirects here to Mesalazine http://en.wikipedia....wiki/Mesalazine

http://en.wikipedia....ine#cite_note-1

Mesalazine (INN, BAN), also known as Mesalamine (USAN) or 5-aminosalicylic acid (5-ASA), is an anti-inflammatory drug used to treat inflammation of the digestive tract ulcerative colitis[1] and mild-to-moderate Crohn's disease.[2
..... as a derivative of salicyclic acid, .....

in other words, it's like aspirin, sort of , as salicylic acid is the plant version of aspirin from willow tree bark. The drug pills are coated so they don't dissolve until they are in the intestine.

____________


So sorry you are feeling pukey having moved to CA from Penna. We have a great deal of Lyme disease out here in CA, so if you are in an area where there are deer, be vigilante, and if you are tick bitten, get tested. That said, I also wonder if you are on well water, by any chance, or have you changed your diet in any way since the move ?
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#5 Judyin Philly

 
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Posted 28 January 2010 - 07:18 PM

Thanks so much Niki and Patt and Tacalal.

I just read your post and will read careflly after this post. A lor of info
Thanks for the time it took

This Dr said the original tests in his opinion, Didn't show the TTG from original celiac panel in 1995
My PA GI said the same thing

I'm going to send this link to Robbin, Gluelesss,
I'll be back later tonight but kinda wanted to bounce this up with a post

I hope more people post as I did a search on c.com earlier but not much relavant came up

Love you guys
Judy
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Judy in Southern CA

#6 jerseyangel

 
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Posted 28 January 2010 - 07:30 PM

Judy--What about the other tests from the original panel? If you know or have them, post them because there are some people on here who are very good at interpreting the them.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#7 Judyin Philly

 
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Posted 28 January 2010 - 07:34 PM

We have a great deal of Lyme disease out here in CA, so if you are in an area where there are deer, be vigilante, and if you are tick bitten, get tested. That said, I also wonder if you are on well water, by any chance, or have you changed your diet in any way since the move ?

- Show quoted text -

Just saw this
deer in PA to
Tested 4 times and always neg but I know the tests they use aren't usually usually accurate.
Even had the bulls eye on one and was on doxy



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Judy in Southern CA

#8 Judyin Philly

 
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Posted 28 January 2010 - 07:40 PM

Patti



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Ha --
-if I can find them

I had on old computer
will see if I can find in stuff in My new GI folder.
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Judy in Southern CA

#9 jerseyangel

 
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Posted 28 January 2010 - 07:43 PM

Patti



Posted Image
Ha --
-if I can find them

I had on old computer
will see if I can find in stuff in My new GI folder.

I was thinking that the doctor's office could give (or send) you a copy of what the doctor was reading (presumably a copy of your old tests from your former doctor?). You have a right to them.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#10 Judyin Philly

 
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Posted 28 January 2010 - 09:47 PM

I was thinking that the doctor's office could give (or send) you a copy of what the doctor was reading (presumably a copy of your old tests from your former doctor?). You have a right to them.


Patti
I went through the original
seems like the Iga wasn;t high so Tgt might not have been done
I couldn't find a number for it any where on the paper
It was a terrible faxed copy

giving up searching for tonight
thanks ladies
Judy
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Judy in Southern CA

#11 ravenwoodglass

 
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Posted 29 January 2010 - 03:30 AM

As others have said if you have been gluten-free you are going to show up negative. It is also possible to have celiac, be eating gluten and still show up negative. Up to 20% of us will according to the NIH. If the diet was helping keep with it.
We can of course have other issues in additon to Celiac. I don't know much about MC so I can't add much on that. I hope they can get the MC resolved for you and give you some relief.
Here are some links with info on MC which is also called 'Collagenous Colitis and Lymphocytic Colitis'. I included ones from Mayo, NIH and Medicinenet.

http://www.medicinen...tis/article.htm

http://www.mayoclini...colitis/DS00824

http://digestive.nid...agenouscolitis/
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#12 JLH

 
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Posted 29 January 2010 - 07:16 AM

Almost everything you need to know about Microscopic Colitis can be found at http://www.perskyfarms.com/ It is the best place in the world for help and support.

This is my first actual post. I don't know what happened with the others........
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