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

[Judyin Philly]

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

[nikki-uk]

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

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

[jerseyangel]

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.

[Takala]

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.

Open Original Shared Link

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:

Open Original Shared Link)/ASACOL.html

____

wikipedia Asocal redirects here to Mesalazine Open Original Shared Link

Open Original Shared Link#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 ?

[Judyin Philly]

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

[jerseyangel]

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.

[Judyin Philly]

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

[Judyin Philly]

Patti

Ha --

-if I can find them

I had on old computer

will see if I can find in stuff in My new GI folder.

[jerseyangel]

Patti

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.

[Judyin Philly]

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

[ravenwoodglass]

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.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[JLH]

Almost everything you need to know about Microscopic Colitis can be found at Open Original Shared Link 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........