Celiac Disease Related Symptoms

[WendyToo]

Hi,
I have a dear friend who is dealing with Ciliac Disease. He has a slight build. He is on a Gluten Free diet. He gets rundown easily and loves to work lots of long hours.
I am not sure how to support him other than be concerned and tell him that I am concerned. He lives in Canada where it seems it takes WEEKS to get to see a doctor or tests done.

I have been reading about the disease am disturbed reading all the symptoms that some people have with this.

Now they are looking at giving my friend an iron transfusion. Will that help for a long period of time?

What is good for them to eat other than Gluten free food. It doesn't leave very much for them to eat. Maybe if I get some recipies for him it would help?

Thanks for your time!

Wendy

[slpinsd]

Megan,
I am having the same symptoms. Breathing difficulty, like I can't take in a deep breath, after I ingest gluten products. I also get a feeling that almost feels like my heart fluttering, but it is in the middle and a little above the heart area. Then sometimes it is relieved by belching. I am on acid reflux meds- dont seem to be helping this. I am not yet officially diagnosed with GS yet.

[Guest]

bump

[Deb]

I'll help with this bump. It's been a year since I posted in this thread. I rarely ever get glutened, but I did have an accident with corn/soy in a Quaker Rice Cake snack food. I was ill for over 3 weeks with that accident. This year around Christmas time I was glutened by barley--it didnt use to effect me, this year it did, at least it is what I think I was glutened by. My neuropathy seems to be flaring as of late and I just want to stress here; if you know you are celiac or gluten intolerant and you notice symptoms in your child, then please have them tested so they dont go years with this disease hurting them on the inside. Neuropathy doesnt go away and gets progressively worse over time--I know I wouldnt be suffering from this had a doctor figured out what was wrong with me years ago. Please have them tested if they are willing--my kids wont do it as of yet, although my daughter is seriously thinking of going gf--she is corn intolerant now. Deb

[Guest]

bump

[aklap]

bump
_________________
Al

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

[aklap]

Hey Angela...have you seen this??
_________________
Al

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

[aklap]

bump for MNK
_________________
Al

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

[Amooliakin]

I had not read this list before but was surprised to see on it dry and chapped lips. My daughter has had dry lips for years and we NEVER could figure out why. Man - the more I learn about this the more amazed I am.

And after reading how some of you have suffered undiagnosed for years of agony, I am so grateful that my daughter at age 8 has a gluten free life of health ahead of her.

Thanks to every one of you for your adding to this remarkable resource!
_________________
Amy - Mom to two kids, one with Celiac, and assorted pets...

[Fidissimus]

She really is one of the lucky ones! I wish someone had dx'd me at 8...
_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[aklap]

Gola - look the list in the 1st post and see what you find fits.
_________________
Al

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

[Rachel]

I was just wondering if anyone can tell me what bone pain feels like. I get a constant aching in my legs and knee pain, but what does bone pain feel like?

Thanks, Rachel

[aklap]

Hi Rachel,

I can't say I've had bone pain, so I can speak to that. BUT I have had joint pain. I had problem gout back in my NGF days. Big problems.

Does your aching feel like a muscle ache?

Do you get numbness,tingling, burning? Maybe peripheral neuropathy [which can be connected to CD].
_________________
Al

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

[Rachel]

Thanks for replying. I've just joined this site! I haven't been diagnosed with Celiac Disease yet. But I've have abdominal pain and other symptoms for the last 9 months.

A qquick history::: I got mono last summer with abdominal pain at the same time. An ultrasound showed sludge in my gall bladder so I had that taken out at the same time. I still had abdominal pain. I had another pelvic and abd, ultrasound and it was negative. My Gyne Dr. thought maybe it was endometriosis so I had an exploratory lap in January and they did find 1 small spot and removed it... but I still have pain. My abdominal CT is negative a few weeks ago.
My abdominal pain is crampy and feels like it's all over from my lower abdomen on both sides up to my ribs and around to my sides. I also have aching down my legs and in my knees, and my ankles looks slightly swollen at night before I go to bed. And I have a lot of fatigue.

I saw a GI Dr. today who took some blood and I'm going to have a colonoscopy and endoscopy next week. She is doing a Celiac panel.... but only after I asked. She thinks this is just irritable bowel... but she doesn't have an explanation for my other symptoms.

Now back to the bone pain::::
My pain is an aching down both legs pretty much all day long and even when I'm laying in bed at night. It's not spasms. I also have aching in my knees, worse at times when I walk. Once in awhile (in the last 9 months when all this started with my abdominal pain) I will have one of my calves that will feel like I have a sore muscle when I walk. Like I've worked out and it's sore. it's usually only in 1 then it goes to the other at other times.

I was also wondering if people with Celiac disease usually just have abdominal pain only after you eat or can you have constant pain that doesn't go away? I also walk around feeling like I have a touch of the flu all the time!

I'm so frustrated and would love any input anyone can give me!!!

Thank you so much!

Rachel

[aklap]

Hi Rachel,

Sorry to hear you're hurting.

Yeah...IBS/IBD...aka I Be Stumped. So many time Celiacs are mis-dx'ed with a "catch-all" syndrome like IBS/IBD.

Hmmm Mono, eh? Infection, illness, surgery, pregnancy, some say stress can trigger Celiac Disease.

I had also sorts of abdominal pain - it moved around. I had Upper GI, Ultrasound, EGD and Colo - all revealed not much [they did find a polyp and removed it]. I suspect my docs thought I was nuts. My stomach would just grind and churn - all the time - not just after eating. You talk about feeling like you had a touch of the flu all the time...for me...it was like being hung over all the time. Hung over - that's best description I can come up with.

I have heard others talk about leg pain disappearing once dairy was removed. Dairy is a common food intolerance.

I can't say about the edema in the ankles...I think edema is listed as one of the sx's.

Those with Endo have experience good results with a GF diet.

Did the GI do a Full CD panel? Check out Our Thread on Celiac Blood Tests & More Diagnostic Info for the full panel. Many times only 1 or 2 tests are done. But to get the full picture, the entire panel must be done.

Have they done any fat soluble vitamin levels on you? A, E, D, B-12?

Since you're a nurse you might want to check out Our Thread on Info aimed at Medical Professionals. Lots of great stuff there!!

Also see Our Path's to Gluten Free-dom Thread for others stories. You might be able to find others with similar sx's.


Keep looking for the answers, I think you are on the right track!!
_________________
Al

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