Being tested for celiac, any advice?
 

I am having an endoscopy and colonoscopy on Tuesday. I was dx with MS a while back. I have a couple of friends who swear i probably dont have MS, I probably have celiac. now, I dont know about that, but since I am having this endo done anyway, I have agreed to ask for celiac biopsies while they are there.

I am having the tests because I have a peice of intestine that keeps folding over on itself, causing pain, bloat, and a dramatic slow down in function. The surgeon wants to just go ahead and remove that peice of intestine. I said before we get nuts, lets have the GI guy go take a good long look, and see how well the intestine looks from the inside. MUCH less invasive, and perhaps can save me a surgery. I dont want ANY surgery, much less one that will remove 4 feet of intestine.

So, to appease my friends i have asked for celiac biopsies while he is in there. The MD thinks its a great idea! Should I give him any special advice? tips? suggestions?

I really dont want to give up gluten. I am already on the makers diet, or very close to it, and dont want to be restrictive any more than I am already. IF i turn up positive on the celiac test of course I will do what I need to do, but if I am negative I am hoping to just continue on my path.


thanks! :cool:

Gluten free is not that difficult Dej. My DH is doing it so I got a nice bread machine, ingredients and a recipe book and he eats quite well. You can also have corn tortillas and chips and such. It really isn't all that hard so don't worry. If you have Celiac it's worth following the diet. :hug:

My DD is gluten intolerant and lives and extremely strict Gluten free life. Has since she was a teenager. I am in awe of the stuff she comes up with, and how disciplined she can be. I know if I have to I will be just fine.


I was wondering more if I should give any advice, tips, or suggestions to the MD doing the test. I have heard he needs to take at least 5 samples and not from the same area. He needs to slow down and really look for flattened areas...that kinda stuff.

you guys always rock at support. thanks! :hug:

jccgf should be along soon... but if you read here a bit...
there seems to be new information that one can be gluten intolerant and not show positive biopsy results.

this thread discusses that:
http://neurotalk.psychcentral.com/thread104889.html

and this gives explanation of the various blood tests:
http://neurotalk.psychcentral.com/thread105601.html

Make sure you are eating gluten before any testing is started, so it will give accurate results.

Thanks to all. :hug:

My "prep" day is tomorrow, so I doubt I will have much focus, or concentration. My tummy is quite painful, swollen and upset without being pumped full of laxatives. This should be fun.

btw, the DD is adopted. Her real mom was tested for celiac and was negative. DD was just too ill to not take it all very seriously. Dramatic improvement after 6 months of being gluten free. took a long time to adjust, and find all the hidden glutens. I went gluten free with her for a long time, and felt no change in my self, or my mental status. I am open minded, and willing to face this thing. Since they are going to be there anyway, i will ask for 5 biopsy sites from different areas and send them off. I have not had any blood work done.

My CT scan shows I have a peice of intestine that is folding over, and has become "floppy" so, the surgeon is geared up and ready. I am trying hard to avoid his knife, and asked for a look by the GI guy. This is MUCH less invasive, and perhaps we can see how upset, or damaged the tissues are without hacking me open.

Thanks for all the public and private well wishes. you guys rock! :hug:

I have lived with a "floppy" GI tract. I was born with a malrotation grade 2....I have had many "spells" of pain, high white count...etc. All of my colon is on the left, my appendix is on the lower left, my stomach is twisted 90 degrees clockwise.
So I can have right upper gastric pain, at times.

I will not have surgery...and several GI docs said better not anyway... The most critical thing I avoid is gassy foods. I use Maalox advanced (has simethicone in it) daily.
Cabbage, cauliflower, some spices, and most recently fructose and also coffee can set me off. Any stomach virus is a major event and takes longer to recover from.

Some dietary control, and smaller meals, and some Librax on bad days, and I am finally fairly normal at 60+. It was really hard on me when I was in my 20's. I ended up with an obstruction when 27. I managed to evade the scalpel even then.
I'd get another opinion before going under the knife.

Good luck on the biopsy! I hope everything is breezy easy for you!
Let us know what they find.

There are some "lesser" findings that suggest gluten sensitivity (not necessarily celiac disease), as well, like lymphocytic gastritis and eosinophilic esophagitis. So, be sure you get a copy of the entire report!

They took samples from my esophagus, my stomach, my intestine, my duodenum, and so on. He took more than 8 he said. Wanted to be very sure that he covered many areas, and not just grab two bites from the same corner. He said he has seen a couple of MS patients that did dramatically better after being dx with Celiac, and put on proper diets. He did reccomend that I NOT change my current diet unless I show some positive or strange biopsy results.

btw, I am on the maker's diet currently. I eat clean, and healthy and dont eat prepackaged, or boxed foods. We have mac and cheese, we just have to make it from scratch. We have hamburgers, we just make them from scratch. We have bread, but its home made. No preservatives, or additives in this house.

I am on a good multivit, probiotics, colostrum, and cod liver oil with flax seeds and so on. So...he felt I am doing a great job with my current diet, and would not restrict me unless the tests ring up as something being there. My face/jaw line was swollen after the test. He said he "scratched" my esophagus on the way in, because he had to push so hard, and the tube was dry. He apologized, and said that it does happen sometimes. The swelling is resolving, and feeling much better. now, its just a waiting game.

btw, he found 3 polyps, but they always find those on me, and said I had mild inflammation in my tummy, and dueodenum. other than that, he really didnt see alot of evidence of issues. We are just waiting on biopsies now.

Thanks for the support. :hug:

sorry to be late to report.

ALL celiac biopsies were negative. I was told that my intestinal wall is pretty and pink. No area of inflammation, no blanced areas, no flattened areas. he took biopsies from several regions, and was quick to tell me that he has seen several MS patients that actually had Celiac and their lives improved dramatically when placed on a proper diet. He told me I dont have celiac, and he doesnt even suspect intolerance. He suggested that I maintain my normal diet. I am already on the makers diet, and he was happy with that.

The polyps as well were negative, and all is quiet in tummy land.

I still have URQ pain off and on, and think at this point I am whiny. so, I am trying to do distraction things. I figure it will either turn the corner and get worse, or calm down. either way, I will take care of it.

Thanks for all the support.

are you on steroids? this was mentioned in another thread.....somewhere, lol.....that it may cause a false negative d/t the antiinflamatory action...

nope, no steroids. I was taken off 99% of all my meds for 14 days prior to the testing. From prilosec to vitamins. no fish oils, no tums, no rolaids, no Calcium tabs, and so forth. I was even taken off copaxone for 10 days prior to the test. He said he wanted a clean, non medicated intestine to examine.

whats makers
 

just curious dejibo what the makers diet is. i am doing a little experiment to go gluten free. my headaches have gone away unless i paint, but thats another can of worms.

glad the biopsy was negative.

Lots of info on headache and gluten!

Migraine headache is commonly caused by food allergies. In one study, when common food allergens were eliminated from the diet there was a dramatic drop in the number of headaches per month, with as many as 85% of the patients becoming headache free. The problematic foods most commonly found include wheat (85%), orange (65%), eggs (45%), tea and coffee (40%), chocolate (37%), milk (37%), beef (35%), corn (33%), refined sugar (35%), and yeast (35%). (1,2)

Many reports indicate migraine headaches are common in those with celiac disease (gluten sensitive enteropathy), and are often responsive to a gluten free diet with complete remission in some cases. (3,4, 5,6) In one study of 88 children who complained of headaches and were newly diagnosed with celiac disease, there was significant improvement within 6 months of beginning a gluten free diet. Headaches improved in 68 children (77.3%), and completely resolved in 24 children (27.3%). (6)

The pathogenesis of the headache may be related to autoimmune mechanism, vascular or cerebral blood flow mechanism (3,5), associated with white matter abnormalities (7), nutritional deficiency, or biochemical factors such as serotonin imbalance (8).

Food sensitivity and nutritional testing should be performed on any patient suffering from chronic headache.


References:

(1) Food allergies and migraine.
Grant EC.
Lancet. 1979 May 5;1(8123):966-9.PMID: 87628

(2) Food allergy mediated by IgG antibodies associated with migraine in adults.

Arroyave Hernández CM, Echevarría Pinto M, Hernández Montiel HL.
Rev Alerg Mex. 2007 Sep-Oct;54(5):162-8.PMID: 18693538

(3) Association between migraine and Celiac disease: results from a preliminary case-control and therapeutic study.
Gabrielli M, Cremonini F, Fiore G, Addolorato G, Padalino C, Candelli M, De Leo ME, Santarelli L, Giacovazzo M, Gasbarrini A, Pola P, Gasbarrini A.

Am J Gastroenterol. 2003 Mar;98(3):625-9. Erratum in: Am J Gastroenterol. 2003 Jul;98(7):1674. PMID: 12650798

(4) Migraine and coeliac disease.

Serratrice J, Disdier P, de Roux C, Christides C, Weiller PJ.
Headache. 1998 Sep;38(8):627-8.PMID: 11398309

(5) [Headache as atypical presentation of celiac disease: report of a clinical case]

Spina M, Incorpora G, Trigilia T, Branciforte F, Franco G, Di Gregorio F.
Pediatr Med Chir. 2001 Mar-Apr;23(2):133-5. Italian. PMID: 11594166

(6) Headache in pediatric patients with celiac disease and its prevalence as a diagnostic clue.

Lionetti E, Francavilla R, Maiuri L, Ruggieri M, Spina M, Pavone P, Francavilla T, Magistà AM, Pavone L.
J Pediatr Gastroenterol Nutr. 2009 Aug;49(2):202-7.PMID: 19543115

(7) Headache and CNS white matter abnormalities associated with gluten sensitivity.

Hadjivassiliou M, Grünewald RA, Lawden M, Davies-Jones GA, Powell T, Smith CM.
Neurology. 2001 Feb 13;56(3):385-8.PMID: 11171906

(8) [The prevalence of headache in a population of patients with coeliac disease]

Roche Herrero MC, Arcas Martínez J, Martínez-Bermejo A, López Martín V, Polanco I, Tendero Gormaz A, Fernández Jaén A.
Rev Neurol. 2001 Feb 16-28;32(4):301-9. Review. Spanish. PMID: 11333382

(9) Increased risk for coeliac disease in paediatric patients with migraine.

Alehan F, Ozçay F, Erol I, Canan O, Cemil T.
Cephalalgia. 2008 Sep;28(9):945-9.PMID: 18624809

(10) A woman with daily headaches.

Pascual J, Leno C.
J Headache Pain. 2005 Apr;6(2):91-2. Epub 2005 Apr 8.PMID: 16362649

(11) Migraine, cortical blindness, multiple cerebral infarctions and hypocoagulopathy in celiac disease.

Morello F, Ronzani G, Cappellari F.
Neurol Sci. 2003 Jun;24(2):85-9.PMID: 12827546

(12) Clinical and neurological abnormalities in adult celiac disease.

Cicarelli G, Della Rocca G, Amboni M, Ciacci C, Mazzacca G, Filla A, Barone P.
Neurol Sci. 2003 Dec;24(5):311-7.PMID: 14716525


(13) [Celiac disease and ischemic stroke]

El Moutawakil B, Chourkani N, Sibai M, Moutaouakil F, Rafai M, Bourezgui M, Slassi I.
Rev Neurol (Paris). 2009 Nov;165(11):962-6. Epub 2009 Jan 13. French. PMID: 19144365