Symptom(S) That Point To Celiac And Not Just Intol?

[sreese68]

Despite my bloodwork being negative, my neurologist insisted I try gluten-free for my peripheral neuropathy. I just did a 4-day gluten challenge on my own, and he was right! Now I'm trying to figure out if it's MORE LIKELY to be celiac vs intolerance. I will NOT eat more gluten to get a biopsy, so I know I can't know 100%. (Though I wonder if being gluten-free for 7 weeks and then eating it for 4 days would show enough damage?)

Anyway my symptoms:

internal feeling of shakiness and return of slight hypoglycemia (never got the hunger shakes off gluten!)

brain fog off and on

heart racing sometimes, not feeling tired at night

lightheadedness off and on

little fatigue

irritability

tingling in legs - worst it's ever been

ache in legs (may be from nerves)

constipation showed after neuro symptoms

and finally today, a canker sore (got two of these when on a trip a few weeks ago, so probably from gluten)

Oh, I also have fructose malabsorption and recently became intolerant to brown rice.

Today is 4 days after the last gluten I ate. Feeling better but still a ways to go. I'm considering getting the gene testing, though I know it's not a definite diagnosis. I think it'd be a good piece of the puzzle. Also, if I had two genes, I'd know for sure that my dad needs to be tested. My mom died from early-onset Alzheimer's (got it at 47), hence my vow to NEVER eat gluten knowingly again since I have neuro reactions.

Oh I'm seeing my neurologist tomorrow to discuss all this, but wanted some input from here, too.

Thanks!

Sharon

[ravenwoodglass]

There are some folks who consider celiac and gluten intolerance to basically be the same thing but perhaps with different body systems being more severely effected. The need to be strictly gluten free is the same with each and they both have the same need for other family members to be tested.

You seem to be clearly reacting to gluten no matter what label is put on it. And yes I would suggest to your 1st degree relatives that they should be tested.

You could do gene testing if you want but it wouldn't tell you what parent you got what gene from unless your Dad was tested at the same time. In addition you can be celiac without the two most commonly associated genes and you can also have the two most commonly associated genes and never develop celiac.

[Marilyn R]

I don't know how old you are, but if you're over 50 and due for a colonoscopy, you might as well have an endoscopy. It could still end up being negative, especially if there's much time evolving between when you see the gastro and when the procedures are scheduled.

Depending on where you live, you may have to insist that you have both procedures the same day. (The gastroenteroligists like to space things out in my hometown to increase their take home pay, along with that of the surgery center or hospital, anesthiesiologist, etc.)

There are times that I wish I had the firm diagnosis. I can brush off sentiments from co-workers without a problem, but when I see a medical professional, I get upset by their questions. "Are you sure it isn't in your mind?" "The results were negative?" "Your test results were inconclusive?"

I have permanent nerve and muscle damage from eating gluten. Sometimes I wish I had the diagnosis.

And btw, I have crappy insurance. The upper and lower cost me over $1,000 out of pocket. I wish I'd spent that on massages instead.

(Neuromuscular massages are great for the neoropathy.)

I haven't had the gene testing because I don't have children, and I know I inherited this from my mother. I've been sort of obnoxious to my siblings about getting tested so their kids can know.

I wish you good luck and good health.

[sreese68]

I don't know how old you are, but if you're over 50 and due for a colonoscopy, you might as well have an endoscopy. It could still end up being negative, especially if there's much time evolving between when you see the gastro and when the procedures are scheduled.

I'm 42. I already had a colonoscopy to rule out Crohn's and IBD. I had gone to a GI for constipation and lower, right abdominal pain. Before the colonoscopy, I called my GI to ask him to check for celiac while he had me under, and he said that he saw no reason to do the procedure since I didn't have any signs of celiac. (I have constipation and not diarrhea, so according to him, I can't have celiac!) At the time, I hadn't researched celiac, so I mistakenly listened to him. I plan on asking my neuro if he knows a GI doc I should go to since I'm not going back to the first guy!

Hope all this makes sense. Brain fog has descended. Glad this site has spell check!