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Suspect Celiac - What To Do?

ucemmy22

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ucemmy22 Newbie
ucemmy22
Posted

Hi! Newbie here!

My question - what type of doc should I go to celiac / gluten intolerance? Or should I just eliminate gluten and reintroduce it to see if symptoms reoccur?

History: As a kid (6?), I had food and asthma issues. My mom doesn't have all the info on doctor, etc - but I had skin prick tests done, and lit up for wheat, eggs, milk, cane sugar and beet sugar. My parents took me there because of behavioral issues. Did a 1-2 year rotational diet.. and that was it. No followup. Asthma was later relieved with help from a naturpoath. No issues now! In fact.. now a marathon runner!

Fast forward - irritability and anger came during the teenage years... put on Prozac. Helped with that, and ended up being on it for 12 years. The irritability and eventually mild depression kept me on it. Came off prozac a couple months ago - really don't think i need it. Feel the same without it

Now 25 years old, am tired all the time. Always thought I was just a "really good sleeper and napper" - but the teenage years are over. Weekends are 12-18 hours of sleep a day. During the week, my husband has to drag me out of bed.. I snooze for an hour before work sometimes.

Doc ruled out thyroid and iron. Had a sleep study - very mild hypopnea (AHI of 6,5-15=mild). Interestingly, I had average to above average time spent in the restorative N3 sleep. A MSLT ruled out narcolepsy (avg sleep onset of 5.4 minutes across my 5 MSLT naps but no REM)

Thus, doc gave me the diagnosis of "idiopathic hypersomnia", a.k.a "we don't know why you are so sleepy". Seems like a cop-out. People aren't this tired for no reason.

Been thinking all this could be due to food issues that had plagued me in the past. Extreme/anxiety/massive appetite/irritability/dull headaches/1-2 loose stools a week / very inconsistent bowel movements (sometimes only every 3-4 days). Last friday I had a ton of wheat (2 bagels, sub, powerbar) - and ended up sleeping 18 hours on saturday.

I want to investigate the possibility of celiac. Does this sound like a potential case, or am i crazy? Where should I turn? My family doc brushed off the idea when I mentioned it to him. I see kits you can buy online... blood tests.. fecal tests.. GI docs.. allergists.. etc.

Help!

Thanks!

Emily

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Skylark Collaborator
Skylark
Posted

Yes, you could be celiac or gluten intolerant. Is there more than one doctor in your family practice group? I think you need to ask for a second opinion so you can get the celiac blood tests covered under insurance. If you don't have any other options as far as general practice docs, ask for a GI referral and keep being a pest until someone tests you.

You need a celiac panel that should be total IgA, TTG IgA, and deamidated gliadin peptide IgA and IgG at a bare minimum. If the tests come back negative, try the diet to see if you're gluten intolerant. :)

eatmeat4good Enthusiast
eatmeat4good
Posted

Hi and welcome!

It certainly does sound like your symptoms are caused by gluten.

I too wondered about being tested...for about 24 hours.

Then I couldn't stand it any longer...I just had to know if gluten was the issue.

So I quit it.

All the sleepiness, fatigue, irritability, irrational anger, sores that wouldn't heal and weight gain resolved. I had muscle issues too.

If you are desperate and you think this is it you can just go gluten free. I never regretted it. I am one year and 5 months gluten free and have a full active and healthy life unless I get poisoned by traces of gluten.

That tells me everything I need to know.

My son has it too.

He had severe asthma as a child and was on prednisone and antibiotics for years. No more asthma for him after a few months gluten free.

It sucks to sleep your life away.

Pursue testing if you must. But either way, go gluten free as soon as possible so you can start living your life again. I bet you won't regret it at all.

beachbirdie Contributor
beachbirdie
Posted

Hi! Newbie here!

My question - what type of doc should I go to celiac / gluten intolerance? Or should I just eliminate gluten and reintroduce it to see if symptoms reoccur?

History: As a kid (6?), I had food and asthma issues. My mom doesn't have all the info on doctor, etc - but I had skin prick tests done, and lit up for wheat, eggs, milk, cane sugar and beet sugar. My parents took me there because of behavioral issues. Did a 1-2 year rotational diet.. and that was it. No followup. Asthma was later relieved with help from a naturpoath. No issues now! In fact.. now a marathon runner!

Fast forward - irritability and anger came during the teenage years... put on Prozac. Helped with that, and ended up being on it for 12 years. The irritability and eventually mild depression kept me on it. Came off prozac a couple months ago - really don't think i need it. Feel the same without it

Now 25 years old, am tired all the time. Always thought I was just a "really good sleeper and napper" - but the teenage years are over. Weekends are 12-18 hours of sleep a day. During the week, my husband has to drag me out of bed.. I snooze for an hour before work sometimes.

Doc ruled out thyroid and iron. Had a sleep study - very mild hypopnea (AHI of 6,5-15=mild). Interestingly, I had average to above average time spent in the restorative N3 sleep. A MSLT ruled out narcolepsy (avg sleep onset of 5.4 minutes across my 5 MSLT naps but no REM)

Thus, doc gave me the diagnosis of "idiopathic hypersomnia", a.k.a "we don't know why you are so sleepy". Seems like a cop-out. People aren't this tired for no reason.

Been thinking all this could be due to food issues that had plagued me in the past. Extreme/anxiety/massive appetite/irritability/dull headaches/1-2 loose stools a week / very inconsistent bowel movements (sometimes only every 3-4 days). Last friday I had a ton of wheat (2 bagels, sub, powerbar) - and ended up sleeping 18 hours on saturday.

I want to investigate the possibility of celiac. Does this sound like a potential case, or am i crazy? Where should I turn? My family doc brushed off the idea when I mentioned it to him. I see kits you can buy online... blood tests.. fecal tests.. GI docs.. allergists.. etc.

Help!

Thanks!

Emily

You might ask your doctor for your lab numbers on the thyroid. Many docs will say you are "normal" even if you are heading toward a thyroid problem.

When I first started investigating my health issues, I had a very high normal TSH, and the lowest possible "normal" Free T4. I had all the classic symptoms of low thyroid. An endocrinologist told me he never treats low thyroid until the patient's TSH goes above 10! I found countless other thyroid patients who have been told the same thing, yet they responding dramatically to treatment.

Concerning thyroid, I don't believe what the docs say until I see the numbers.

This is not to say there isn't something else going on, I'm not a medical professional. Just saying, don't let them dismiss thyroid without you seeing first-hand that the numbers are decent.

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