Celiac Expert

[k2626]

Saw a new GI today. He was asking why I was there (ongoing pancreas inflammatoin,and that rheumy referred me-was seeing her due to neuropathy, muscle twitching, stabbing/stinging pains etc) Within 4 minutes he said, I think I know what is wrong but we need to test you for it. I said let me guess...celiac. He said yes. He is an expert on celiac (which I had no clue going into it) , he has written papers, taught on it, has co written a book, and is working on a celiac drug. I told him I had a lab drawn 2 yrs ago throug labcorp, he laughed and said those labs are irrelvant as its not a whole panel. So he is doing a full panel and genetic testing with this company: Open Original Shared Link

He said the neuropathy, pancreas inflammation etc all fit into this. I asked him why my gut wouldnt be inflammed but pancreas would. He went on some 5 minute explanation. Also get this, sometimes people have NEGATIVE biopsies but still hold a gluten sensitivity. He thinks I have had this and the migraines and GERD were the beginning phases of how its effecting me and that my dads illness triggered it to a new level. I did read that emotional or physical trauma can cause it to break out...similiar to fibro. We will see, trying not to get my hopes up...you know how experts can be, they think everyone has the disease.

Please keep your fingers crossed that I DO have this so I have answers and fixable answers.

[tictax707]

fingers crossed. Let us know how it turns out. I see you joined almost 2 years ago. Have you been gluten free since then? just curious...

[WheatChef]

After all of the other doctor stories I have read on this board, it sounds like you found the single GI doctor in America who actually knows what the hell gluten sensitivity/celiacs is. You are most likely unaware of just how lucky you may be.

[k2626]

I have not been gluten free, this is amoung one of the many things I thought I have had such as -lyme, MS, lupus, ALS-all that has been ruled out. I have about 40 pages of labs, have had MRI of my brain, spine, stomach, had three EUS of my pancreas and of my stomach, had an EMG for my muscle twitching. This is all that is left. If this is not what is going on with my I have no clue what to do.

I do realize how lucky I am to have fallen into this drs lap, I was NOT seeking a celiac expert. Really, was looking for another GI that could give me another opinion on my pancreas (it has been mildly inflammed several times-dad died of pancreatic cancer so I want to be SURE 110% nothing strange going on there),and perhaps one who may be able able to connect that with all my other odd symptoms. I did almost cry when I started talking to him. Not only did he say what I have somewhat suspected within 4 minutes, he also made me feel that its OK to be concerned about my pancreas, that even if my labs come back neg for gluten then we will watch it every 6 months. He did say how MANY drs have no clue about gluten, the issues it causes and how complex the disease is. He told me how some people have neg biopsies and that means nothing, how some people may have neuro issues and no gut issue-I just happen to have both. He thinks that likely I have had is simmering for years (ie-gerd, some stomach issues, migraines) and that my dad's illness really triggered it and stepped it to the next level (that is when all the nuero stuff started-followed by pancreas issues, nail abnormalities etc)

So, please say a prayer or cross your fingers. I just want answers after 2 yrs of hell!!!

Thanks for listening

[mamaw]

wheat chef you are right on with your comment!

I hope this is the answer for you. This is the best illness to have! No chemo, no damaging high priced drugs,no nothing except a life change in the way you eat! My dx's was ALS years ago! So this has been a blessing for me.....& no better time to get dx'd . gluten-free food is readily available & its no longer bland cardboard.....gluten-free has come a long way but doctors just haven't got it yet so you are sooo lucky to have found a expert....

blessings

mamaw

[k2626]

Mamaw-wow, how terrifying...thank God you have celiac and not ALS. What symptoms did you have where drs dx'd you as having ALS? I assume weakness, twitching and some wasting? I do not have the weakness or wasting that I see, just twitching and it comes in waves. At its worst (when I was under a lot of stress due to my father) I had THOUSANDS per day, along with extreme joint cracking and grinding. My EMG ruled out any of the scary muscular stuff, but I had that when it all started.

[mamaw]

I would melt like a snowman , fatigued, mentally drained, lots & lots of pain, difficulty swallowing, choking, no strength, migraines, rash & too many more things to mention. I have motor neuron damage to this day but it has improved some. Muscle wasting

The docs started out with oh you have MS, then lupus, then to Gillian Barre, then ALS....I actually got my medical disability on that ALS dx's... I guess it got approved quickly as most ALS patients are gone within a couple of years! I surprised them...........

The year before all this stuff happened I couldn't hold water down without the big D -- it lasted for over four months but I was so sick of doctors & them not knowing anyhting I just put up with the BIG D. I was sick then as well.I also was anemic as a child. again never knowing about celiac. So I'm guessing I probably lived with celiac a long time before being dx'd.

My villi had healed before my celiac dx's because no one ever told me not to stop eating wheat poison before the endo! I did the bloodwork which confirmed & then I did DNA testing. I have one celiac gene & 1 gluten intolerant gene.

After me my daughter was tested & full blown celiac with very blunted villi, next her youngest at 2 /1/2 went for an endo & was dx'd, about two years later the other child was dx'd. SO four of us gluten-free for life.....

I think wheat is not fit for any human to ingest... we don't have a couple of stomachs to help digest this poison .

I do have other autoimmune disorders which seems to be what happens to many people. rosacea ( which improved with the gluten-free diet), thyroid disease, grave's disease, eye disease, fibromyglia, ostepenia.

this why I'm so grateful for celiac disease.....

blessings

[Reba32]

I suppose as diseases go, once it's diagnosed Celiac is fairly easy to deal with, and once "treated" with a gluten free diet, one can live a better, and healthier life.

Though even if you do end up with another "negative" blood and biopsy, it is still possible to be gluten intolerant without actually having Celiac. But going gluten free will still help you be healthier. I truely believe that, as one book I've read says, Celiac disease is gluten intolerance gone horribly wrong. And eventually most intolerants will end up as Celiacs. Why wait until the damage is done?

I wish I'd been diagnosed earlier myself, and may have been, if I lived somewhere other than North America.