I am dumbfounded

[Padams]

Hi all! Sorry for my absence. A lot has popped up at once.

Just wanted to stop by and vent my confusion. I had a call from my GI today. I had a colonoscopy and endoscopy one week ago .. he said that all of the biopsies and thyroid test looked perfect -- except my unknown case of acid-reflux disease.

I was blown away. My GI said that the colonoscopy would give him a first hand view of my villi, as would the biopsies. He suspected that I was still consuming gluten -- they did blood work -- and it all came back perfect.

I was happy until he informed me that I may have the rarest type of CD. I may have to go on an IV for the rest of my life since my weight loss and overall health is decreasing, fast. I've lost 10 more lbs. without trying last week, and I think about 4 more this week.

How can a gluten free diet not help me? What am I going to eat? More tests are scheduled for Thursday.

Wish me luck!

-Patrick
_________________
Patrick
06/14/05
I love Danna Korn

[aklap]

Hi Patrick,

Sorry to hear about this. I suspect what he is talking about is Refractory sprue. From what I've read, it really is rare, but does exist.

I hope they find some answers for you! Hang in there!!


Am J Gastroenterol. 2002 Aug;97(:2016-21. Related Articles, Links


Etiology of nonresponsive celiac disease: results of a systematic approach.

Abdulkarim AS, Burgart LJ, See J, Murray JA.

Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota, USA.

OBJECTIVES: Nonresponse or relapse of symptoms is common in patients with celiac disease treated with gluten free diet. Refractory sprue (RS) is defined as initial or subsequent failure of a strict gluten-free diet to restore normal intestinal architecture and function in patients who have celiac-like enteropathy. The aims of this study were: 1) to identify causes of persistent symptoms in patients referred with presumed diagnosis of nonresponsive celiac disease (NCD); and 2) to characterize patients with true RS. METHODS: Patients were identified who had been systematically evaluated for NCD between January 1997, and May 2001. Patient records and small bowel biopsy results were reviewed. RESULTS: A total of 55 patients were referred with a presumed diagnosis of NCD. Six did not have celiac disease and had other diseases responsible for their symptoms. Diarrhea, abdominal pain, and weight loss were the most common reasons for evaluation in cases of NCD, whereas weight loss, steatorrhea, and diarrhea were the most common presenting features of RS (nine patients). Of the 49 patients with celiac disease, 25 were identified as having gluten contamination. Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue. CONCLUSIONS: Based on this study, we conclude the following: 1) gluten contamination is the leading reason for NCD; 2) of NCD cases, 18% are due to RS; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of RS is made.

PMID: 12190170 [PubMed - indexed for MEDLINE]
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Judy]

Oh, Patrick! I'm so sorry to hear your news. Please keep us posted. This is definitely something about sprue that I didn't know.
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Judy

[Guest]

Patrick, I hope they get your weight loss stopped and get you some calories and nutrition soon. Of course, I hope your body begins to heal soon and you can get the nutrition by mouth, but if you need other treatment right now (IV) then I hope you get it.

I am sorry you did not get better news from your testing. ((hugs))

[paw]

Patrick -- that post as guest was me. I did not log in before posting. Sorry!

[cruelshoes]

Patrick - I am relatively new to the board, and have read a few of your posts. I have done IV feedings 3 times in my life. For 2 years during cancer treatment as a teenager in 87/88, for another year in 1994 and for a month just this august. This was all pre-diagnosis of Celiac. While it is not the most fun I have ever had in my life, it is definitely doable. This last time my central line was in my upper arm, and I was able to carry my IV bag in a backpack. I even wore it during work. I hope you do not have to do it, but if you do, it won't be as bad as it initially seems. It is definitely better than starving to death.

If you have any questions about how TPN (total parenteral nutrition) works, I can answer them from personal experience.

Hoping for some good news from you from your dr!

-Colleen

[aklap]

Hi Patrick,

Other foods have been implicated in causing villi damage. It might be something to look into. Here's some more info: http://brain.hastypastry.net/forums/showthread.php?t=3332

Good luck tomorrow with your tests! Let us know how they go. We're all pulling for ya!

Here is some info on Refractory Sprue:

Successful Treatment of Refractory Sprue with Cyclosporine - http://www.annals.org/cgi/content/full/119/10/1014


http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10931221&dopt=Abstract

Distinction between coeliac disease and refractory sprue: a simple immunohistochemical method.

Histopathology. 2000 Jul;37(1):70-7. Related Articles, Links

Patey-Mariaud De Serre N, Cellier C, Jabri B, Delabesse E, Verkarre V, Roche B, Lavergne A, Briere J, Mauvieux L, Leborgne M, Barbier JP, Modigliani R, Matuchansky C, MacIntyre E, Cerf-Bensussan N, Brousse N.

Department of Pathology and Universite Rene Descartes-Paris V (EA 219), INSERM E 9925, Paris, France.

AIMS: We recently showed that refractory sprue is distinct from coeliac disease, the former being characterized by abnormal intraepithelial T-lymphocytes expressing a cytoplasmic CD3 chain (CD3c), lacking CD3 and CD8 surface expression, and showing TCRgamma gene rearrangements. To take advantage of the abnormal phenotype of CD3c + CD8 - intraepithelial lymphocytes (IEL) in refractory sprue we developed a simple method to distinguish coeliac disease from refractory sprue. METHODS AND RESULTS: Comparative immunohistochemical studies using anti-CD3 and anti-CD8 antibodies were applied on paraffin-embedded and frozen biopsy specimens in refractory sprue (n = 6), coeliac disease (n = 10), healthy controls (n = 5) and suspected refractory sprue (n = 6). Comparable results were obtained on fixed and frozen biopsy specimens. In four of the six patients with suspected refractory sprue, abnormal CD3c + CD8 - IEL and TCRgamma gene rearrangements were found, as in refractory sprue; the remaining two patients had normal (CD3 + CD8 +) IEL and no TCRgamma gene rearrangements. Both patients had coeliac disease, as one failed to comply with a gluten-free diet, while the other was a slow responder. CONCLUSION: This simplified immunostaining method using anti-CD3 and anti-CD8 antibodies on paraffin sections can distinguish active coeliac disease from refractory sprue and should prove useful in clinical practice.

PMID: 10931221 [PubMed - indexed for MEDLINE]


Refractory Sprue by Michelle Melin-Rogovin, University of Chicago Celiac Disease Program: http://www.celiac.com/st_prod.html?p_prodid=877&sid=2KAJFV1FE2kL5xg-00105103187.70
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[paw]

Patrick, there is a condition that has very similar symptoms to Celiac called autoimmune enteropathy It does not respond to a gluten free diet and they have to use medication to help the small intestine.

It is a serious digestive illness, and I don't know if this is your problem. When you google autoimmune enteropathy you don't get a lot of good information since it is a rare condition. Still, it might be worth asking the doctors about to see if it applies to you or not.

I hope they find you some answers soon and get you healthy again.

[aklap]

Paw,

Very interesting...

Take a look at this:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9228963&dopt=Abstract
Lancet. 1997 Jul 12;350(9071):106-9. Related Articles, Links


Comment in:
Lancet. 1997 Sep 27;350(9082):959-60.

Autoimmune enteropathy and villous atrophy in adults.

Corazza GR, Biagi F, Volta U, Andreani ML, De Franceschi L, Gasbarrini G.

Department of Internal Medicine, University of L'Aquila, Italy.

BACKGROUND: Autoimmune enteropathy is a condition described in children and characterised by villous atrophy, which is unresponsive to any dietary restrictions, and by the presence of enterocyte autoantibodies. We report two adult patients who fulfilled all the criteria for the diagnosis of this disorder. METHODS: Over the past 5 years we have seen four adult patients (all women, median age 51.5 [range 38-64] years) with subtotal villous atrophy, which was unresponsive to a gluten-free diet. The patients were HLA-DQ2 positive. IgA antigliadin and antiendomysial antibodies were not found in any of the patients. We did an indirect immunofluorescence search for enterocyte autoantibodies on monkey jejunum and for other autoantibodies for all four patients. FINDINGS: Of the four patients, two were positive for enterocyte autoantibodies and one of these two patients was positive for antiactin, antiparietal cell, and antithyroid microsomal autoantibodies. INTERPRETATION: To the best of our knowledge the two patients affected by severe enteropathy, who had never responded to any exclusion diet, and who were positive for enterocyte autoantibodies are the first cases of autoimmune enteropathy described in adults. We propose that adult patients whose disorders are unresponsive to a gluten-free diet should be tested for enterocyte autoantibodies.

PMID: 9228963 [PubMed - indexed for MEDLINE]


Hmmm I do not know what enterocyte autoantibodies are...yet
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[isto]

Patrick, I have no info to pass on, but please know I am wishing you well and I hope things get better for you. Hang in there!

Danita

[Padams]

Thank you Al, Judy, Paw, Colleen & Danita!!!

It really helps knowing that complete strangers ((although I feel as though I have a bond with those here)) can ease my worries so easily. I'm only 19, nearly 20, years old -- so this information that I have handed to me by my GI and general physician is quite overwhelming.

As most of you know, my tests are tomorrow. Today has been one of the worst days thus far. My knees have been hurting horribly -- to the point where it hurts to drive. I have had plenty of bowel movements today and plenty of gas to go along.

It's frustrating not knowing what is happening inside of my body.

I just want to thank everyone for their thoughts and knowledge! This entry is somewhat pointless, since I have not had anything new occur -- it is a simple thank you.

I will update you all tomorrow. They expect to get the results back on Friday ..

Thanks again!

-Patrick
_________________
Patrick
06/14/05
I love Danna Korn

[Guest]

Patrick,
Sorry to hear that you are so ill. I was just venting about being 100% gf since 2002 and still being so sick. Try white rice (the cheap kind, not uncle bens) and pedialyte (grape tastes best) I have lived on it for weeks at a time. it helps to give you a little energy, and the pedialyte helps to keep you from getting so dehydrated (no IV's !! YaY!) and helps with the muscle stiffness and shooting pains in your body.

Take Care!
Ricci

[Padams]

Everyone,

I just got back from the Hospital. My mom went with me since I wasn't exactly sure what I would encounter. I had to drink the barium mix, that tasted half way decent. Of course, it could be the fact that I eat GF .. and now strange things taste good to me?

I went into the CT scan room and they injected me with some dye. I've had it before; it makes you really warm and you feel as though you have soiled yourself. Strange.

I was there for a few hours, as they wanted to let the barium ride the course that is my digestive system.

The nurse asked if I had anything besides: lower right quadrant cramping and weight loss? I told her that I go poop 7-15 times a day, cramp everywhere and have celiac disease. "What's celiac disease?" she asked me. I wasn't in the mood to answer in a well-thought-out coherent format .. hey, I'm a college student getting up at the butt crack of dawn .. not my time of day

I told her that I am allergic to gluten. She seemed happy with that. I was, too.

I mean, I love educating people about my disease -- well, our disease -- but some days you just don't feel like describing it in detail. "Well, my villi were damaged by my consumption of gluten .. blah blah .. auto-immune disease .. blah blah."

I will know the results tomorrow.

I'll update again, when I get the results.

Take care!
-Patrick
_________________
Patrick
06/14/05
I love Danna Korn

[B Guest]

Patrick,
Like someone said do the white rice & pedialyte etc. Also, I think you are going to have to look at all your food not just gluten free. There seems to be other things going on...

For starters I suggest no gluten, no other grains, no dairy, no corn, no soy. Get all the food allergy tests, for whatever they are worth, at least it will give you some info. maybe stay away from citrus which I think is very hard to digest.

Try homemade chicken broth, carrots, rice, cooked green beans
fruits: maybe pears, apples, grape juice
buy organic if you can.
Good luck

[tobi]

Hi Patrick, So sorry you are having a difficult time with such serious symptoms. This is a drastic time for you and you need to take drastic action. At the Boston area Celiac support group meeting last weekend, we heard Dr. Cynthia Rudert, a gastroenterologist who only sees and treats patients with CD. She practices in Atlanta, GA. You need more than a second opinion and she may be able to help you. Certainly worth a phone call. I wish you all the best.