Need Help - Still no solid diagnosis

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CityGirl75
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/5/2009 9:22 AM (GMT 0)   
Over the last few years (maybe 3-4), I've noticed a significant change in my digestive system.
Here's my history:

Since birth, I have been a lacto-ovo vegetarian. Apparently my personal choice from day one. I always resisted meat and finally around the age of 12, my parents gave up trying to force me to eat it. I have, over the years, tried to introduce some meat. So today, I do like some chicken, in small portions, occassionally. I do eat very few pork items (bacon or pepperoni) on even rarer occassions. I do not eat any red meat. Blekkkk!! Ok enough of that...

1999 - had gallbladder removed after birth of my son due to gallstone
ONLY change was my bowel movements began moving much quicker through my system.

2003ish - I was diagnosed with acid reflux. It comes and goes but when its bad, its BAD.

Beginning several years ago, I started having changes in my BMs. Mostly they were irradic, fluctuating from constipation to diarrhea.
I began seeing blood often in my stools and when I wiped the area. More that just a little bit.

Summer of 2008, I experienced several stressful events. I lost my job and a long-term serious relationship ended abruptly. I'll admit I was stressed out.
One day, I experienced anal bleeding the entire day. It basically came out in the form of blood clots. I went to see my PCP and she said I was now anemic (never had been, even though I don't eat red meat) and referred me to a GI specialist.

I was scheduled for a colonoscopy and endoscopy (?? - tube down my throat)
Results were inconclusive. A few polyps were found, removed and biopsied, benign.
Blood tests ruled out Celiac, Crohn's, UC...they speculated it may be IBS but nothing concrete.

I've always loved milk, and rely on cheese for some of my protein. I've wondered if I have become lactose intolerant but its not always dairy that sets me off.

I experience days where I go from one extreme to the other in bowel movements. Sometimes in same sitting. I often have strange colored stool (bright orange to almost neon green). Sometimes I have a lot of mucus in my stool.

I have started taking a probiotic pill twice per day but it doesn't help it go away 100%.

And I still have anal bleeding sometimes.

A recent blood test showed an elevated liver panel (second time) and I now have a Vitamin D deficiency. I am on prescription Vitamin D to see if it will resolve the issue (I drink milk like crazy and I do NOT shy way from the sun so this one confuses me). I googled Vitamin D deficiency and it came up linked to Crohn's.

I'm so frustrated because its very difficult to live with an unpredictable digestive system. Plus, being a vegetarian, my diet is already limited. I do eat a lot of wheat based products but blood tests came back as negative for celiac.

Not sure if its relevant but I do get frequent migraines and have restless leg syndrome.

Any advice you can suggest is welcome!!!

Thank you!

gfpamela
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/5/2009 10:34 PM (GMT -6)   
 
     I'm sure there are many more knowledgable readers than me but wanted to reply to a couple of things.  My acid reflux went away within about 2 months of going gluten-free.  And came back right away when I started a 'gluten challenge' to see if I actually have celiac disease.  I found out I don't (at least at this time), but I know now from experience that I'm gluten sensitive.  For me constipation is a problem, and on this gluten challenge it really worsened.  Blood in the stool is common for me; I also had the more serious causes ruled out.  And if you are gluten sensitive continueing to eat it can cause many of the problems you are experiencing.   Why not try a gluten free diet for a few months?  There really are more foods you'll be able to eat than you think.  Something I do now and then when it seems there's nothing I can eat - I make a list of all the gluten free foods I can eat.  It almost makes a person giddy, the list is so long. 

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/6/2009 1:12 AM (GMT -6)   
In general, your symptoms can be explained by celiac disease:

*change in BMs
*gallbladder disease
*anal bleeding
*vitamin D deficiency
*anemia (although that is undoubtedly NOT helped by your intense dislike of red meat)
*elevated liver enzymes
*migraines
*acid reflux

I had all of the above at one time or another before going gluten free (and I am a carnivore).

It does not matter whether or not the tests have been negative, nor even whether or not you've had a negative intestinal biopsy. False negatives in bloodwork and biopsies are very common for celiac disease, and I would assume the same for Crohn's.

The best way to tell if you have a gluten issue is to go gluten free for a couple of weeks and see if you notice any changes for the better. If you feel better and your body is functioning better, then you have your answer! Trust your body...you do not need a doctor's prescription to follow the gluten free diet, thank goodness! :)

Just FYI, truly going COMPLETELY gluten free is non-trivial. Here is a link to a primer on how to go gluten free: glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

There is also a very helpful (and active) celiac forum at the following link: www.celiac.com/gluten-free/index.php?showforum=49

Good luck!
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


CityGirl75
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/13/2009 6:48 PM (GMT -6)   
Thank you both so much!!!!

I am going to check out the link.

I will post if this works or not.

Ouch101
Regular Member


Date Joined Dec 2009
Total Posts : 37
   Posted 2/3/2010 6:40 PM (GMT -6)   
I am gluten sensitive--my MAIN complaint was CONSTANT migraines. My endoscopy was negative but my blood work was strange. It would seem that I am IgA deficient because that level was in the normal for celiac but the IgG antibodies scored off the charts (I believe they should reflect each other but no doctor would get into it and only look at IgA level)..anyway, it took about 6 months for my migraines to show consistently that they were probably linked w/gluten. My neurologist was totally floored cuz he said I wasn't sick enough to have celiacs... which, I was sick enough and didn't need worse things. In the end, he finally said "okay, maybe YOU actually have a sensitivity...but it's rare." My migraines are not every day--the cycle was 16 days of horrible headaches and then would finally break after hitting me so hard w/pain and w/me falling into a deep four hour nap. They would be gone for about 12 hours and the recycle through. Now I only have them w/my monthly hormones..which I've decreased even more by going on continuous birth control. Give yourself at least 6 months to really rule out gluten all while keep a symptom/food journal. But you must be totally GF. :D good luck!
2,000 Vit D3 daily, 500 calcium... fibromyalgia, osteopenia, supra ventricular tachi cardia, low iron, low B12, gluten intolerant, .... colonoscopy scheduled for March


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/4/2010 12:09 PM (GMT -6)   
Hi Ouch,

Just FYI...it's very common for celiacs to be IgA deficient. If you are making antibodies you have celiac disease, not just gluten sensitivity. Antibodies = autoimmune disease = celiac disease.

JoAnn

P.S. The first symptom I get when I've been "glutened" is a MASSIVE migraine....feels like the top of my head is coming off.
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com

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