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F.deSales

Member Since 17 Jul 2007
Offline Last Active Jul 26 2008 02:00 PM
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Posts I've Made

In Topic: Help! Pep Talk Needed!

24 July 2007 - 09:09 PM

Let me be the first to offer prayers & a BIG HUG to you.... I understand that this isn't a hard painful test but it sure does make for a sore hinny!!! The prep is the worst part I think...
Hopefully the docs will not ask you to repeat again for a long time... I'm going Aug 8 for my endo & colonoscopy. I said I wanted both done at once instead of two seperate times....I'm also repeating because I was just in the hospital......

I alway tell myself it could be something worse & that there are many who will suffer so much more than me....& I remember my savouir on the cross. I will gladly do the test!!! God's Blessings are being sent your way, be sure to catch them & place them near your heart.

mamaw


Thank you for your pep talk and sending me some blessings! I need to take to heart my quote from my favorite saint (see below) and like you said remember He who suffered so much for us all that we might be saved! I will keep you in my prayers. And when I am feeling "the prep work" I will send extra prayers your way! It looks like you will be having yours one day before me. Do let me know how things went and how you are doing. I read some of your other posts and it seems like you have some medical crosses to carry like me.

God Bless,

Angie

"Do not fear what may happen tomorrow. The same loving Father who cares for you today will care for you tomorrow and everyday. Either he will shield you from suffering or He will give you unfailing strength to bear it. Be at peace then and put aside all anxious thoughts and imaginings" St. F. de Sales

In Topic: Iga Deficiency, Lactose Intolerance, Erosive Gastritis

24 July 2007 - 08:48 PM

Hi all,

I've been reading your posts for quite a while now. I was given the celiac panel about 6 weeks ago. Evidently, the results are meaningless because I am IgA deficient (they did conduct a total IgA for me). GI, to exclude Celiac and positively diagnose me with IBS, took multiple duodenal biopsies last week. Only positive finding at the time of the exam was erosive gastritis; still waiting on biopsies on celiac and cause for the erosive gastritis.

I am also severely lactose intolerant and have been for most of my life. Everytime I google IgA deficiency and lactose intolerance, Celiac-related websites pop up. I've also read that a minority of celiacs are actually IgA deficient. My problem is that my GI is just dying to diagnose me with IBS and get me out of his hair (what little of it there is :)), so he's already biased against a celiac diagnosis (as I suspect most doctors seem to be). Also, I guess without some kind of laboratory proof, I'm hesitant to try a completely gluten-free diet without the endorsement of a medical professional. Someone has mentioned the use of enterolabs to test for celiac? Can you provide me with the website information?
It would be much appreciated!

Elcamino


Hi Elcamion!

I have complete IgA deficiency and allergic to lactose/casein. I am currently being tested for ceilac sprue. My doctor told me that there was a NEW blood test that was for people with IgA deficency its called: Tissue Transglutaminase. Do a google search to learn more about the test. If your doctor has not ordered if ask him too. I will be going to the lab today to have that test done.

My doctor also wants to do a EGD and a colonoscopy which I will have in two weeks. I have nerological problems also and my nerologist told him to do a biopsy. I have been gluten-free for 7 weeks and have been feeling better but now I have to go back on gluten to make sure the test is accurate.

I would love to hear if you had the Tissue Trans. test and what the results were. I hope you don't end up like me, I started with low IgA and became total. I am in the 3-5% of IgA-ers who are severely immune compromised, multiple related illnesses plus allergic to blood other than my own.

Let me know what you results were if you don't mind.

Best wishes to you.

Angie

In Topic: Will I Ever Stop Hurting?

23 July 2007 - 09:02 AM

I am a new celiac diagnosis.. been gluten free for about 2 weeks.. I am 47 and it 17 years to get to this point.. they thought I had some sort of rheumatoid condition for a while test were negative but had lots of joint and muscular pain. Had a postitive biopsy 17 years ago the doctors poo pood it and about 3 weeks ago had another postive biopsy with a probable but not 100% certain genetic test for celiac.. the GI Dr encouraged me to go on a gluten free diet! I have tried very hard to go gluten-free but my symptoms are not gone.. get really sick(cramping abd pain.. very painful bloating) when I accidently get gluten! Will I ever stop hurting? Will going on this diet cause my muscle pain to get better?
Any advice would be so encouraging! I need help believing going to all this trouble will help!


Hi I am also new to all of this but I am not new to arthritis. I have rheumatoid (with a false negative), reactive, and osteoporosis for many years! There is a connection to RA and celiac. Just because your blood work came back neg does not mean you don't have it or some form of it. You need to go on a Gluten-free Casein-free diet for the rest of your life. I would recommend staying away from MSG, preservatives ... have you had an allergy test lately? Food Allergies do cause joint and muscular pain! If you have a form of arthritis, the pain could mean joint damage. I don't mean to scare you but I don't want you to suffer as much as I am. I can not take any medications that have sulfa/sulfates which is just about all meds ... so I have to eat as pure as possible and now with having Ceilac I have to be EXTRA careful. I have been trying to be gluten-free for a month now. But am still in pain. I have to go back to get more tests and they say I will have to eat gluten again before the do the biopsy again. I have complete Iga deficiency which makes all this a challenge.

If you live in the Northern Virginia area I know of a GREAT Dr. that will help you out. She saved my life.

It will help. When I started eating pure (before the Celiac) I was doing better. I was able to cut down on my pain medication.

Do you have any neurological symptoms?

Hang in there. There is a lot of help here that docs might not give.

In Topic: Msg

22 July 2007 - 09:07 AM

I have heard that MSG is bad for us celiac's and I've heard that it is not bad for us. Does anyone here know. It would help us with our son.



STAY AWAY FROM MSG!!! It is bad stuff. I am new to being gluten-free but have been avoiding MSG for 10 years now because of my rheumatoid arthritis & reactive arthritis. It destroys your joints and messes with your nerves. Now I am learning that there is a connection to celiac and rheumatoid arthritis. If I ever eat it, I am in GREAT pain for days! My pain medication does not even help.

In stuff that I have read it messes with kids who have Autism.

In Topic: What Do I Thow Out, What Do I Do, Will I Get Better?

21 July 2007 - 06:39 PM

I am really anti eating out, but if you really want to you could call the restraunt ahead of time and see if they have any bottled/canned drinks. That way there isn't any CC risk at all.

If they just plop the steak on the same grill they use for pancakes, salisbury steak, or the like THAT'S why u got sick. You could also call the manager and see if they'll put foil down, train the staff on gluten-free stuff etc. There's one restraunt here that's not a gluten-free type of place, but they'll use separate bowls/utensils, cook separate stuff. I never got sick there. Worth a try.

If u have non gluten-free snacks (that are grab and go, no prep needed) that probably won't make u sick.

Stick with it!! It gets soooo much easier!


OK, plug your ears ... I MISS EATING OUT! I MISS SAYING TO MY FAMILY HEY I DON'T FEEL LIKE COOKING LETS EAT OUT!!!!!!!

With all the luck I have had with eating out and my other allergies, I think my eating out days are over. :(

Thanks for posting and letting me feel sorry for myself!