Celiac?

[Kreative]

Hi guys,

 

I'm new to this forum and still waiting for the results of my blood test. I'm not certain I've got celiac but I feel that my symptoms are similar to what I've read from other people on this forum.

 

Before I started feeling ill I was having a very active but also stressed lifestyle (doing two jobs in high demanding environments, playing competitive tennis with daily training sessions and living on my own in a foreign country). My diet was extremely carb loaded (I had big bowls of pasta 2 times a day and a big bowl of oatmeal in the morning). I always felt that pasta was the perfect sports / quick energy food so I've eaten it in abundance. 

 

Suddenly one day as I was walking with my colleagues for lunch (and after snacking on some oatmeal cookies) I collapsed with what felt like an episode of hypoglycemia. After some apple juice I slowly recovered but it took 2 weeks before I was able to make it out of bed again. I developed a dry mouth and an on / off sore throat during that period.

 

My first idea was that I developed diabetes but my bloodwork was all fine (I had two thorough tests but nothing showed up) the only thing that was noticeable (but not worrying according to the doctor) was increased liver functioning and a slightly underactive thyroid). Since I collapsed (about 2 months ago now) I've been feeling slightly better but I'm still far from my old self (I'm often dizzy, blurred vision, weak, tired, lost some weight, brain fog, hand tremors and I feel weird after eating). The interesting thing is that despite all these problems I'm still able to do intense sports (mainly cycling) but I'm just not feeling healthy in general. I'm suspecting that exercise releases certain hormones that just make me feel better. 

 

Last week as I was travelling to Italy I had to skip breakfast and I noticed I was feeling better (not dizzy, blurred vision) so I started thinking "maybe it's a food allergy". On holiday last week I had a very simple breakfast (yoghurt with dried fruit and two eggs) and that seemed to really hit the spot (I cycled 5 hours in the mountains without any problems). Since I'm back however I reverted back to my morning oatmeal and I spend most of my morning feeling bad. The oatmeal I'm eating is labelled gluten free but I read that a lot of celiac patients can't tolerate it. I went to the doctor yesterday to ask for a celiac test and I'm not waiting for results.

 

Doctors told me it's probably burnout / adrenal fatigue but I sense a strong connection with the things I eat and the way I feel. They put me on anti-depressants but that just made me feel worse (so I stopped taking those). 

 

I read that celiac is more common in blonde / blue eyed people (that would describe my looks)? Does this sound familiar to anyone?

 

 

 

 

[cyclinglady]

You'll just have to wait for the results of your celiac disease blood panel, but until then, continue to eat gluten in case your doctors want to do a biopsy of your intestinal tract.  And yes, Europeans (and their descendants) in general, seem to have a higher incidence of celiac disease.  If it's not celiac disease, you could have developed food intolerances.  Expand your diet.  Winter squash, sweet potatoes and white potatoes make excellent breakfast choices for athletes.  Don't forget to eat protein too!  

 

Here's my advice from one cyclist to another:  stop exercising so much!  Listen to your body.  If you're feeling "not healthy" then don't do a five hour mountain ride.  Unless you are a pro or training for the Olympics -- it's not worth.  Take a few weeks to really slow down and let your body recover.  It's hard to do this mentally, but it can be done.  Then you can go back to riding/playing hard.  

 

You didn't mention if you're taking thyroid replacement.  Did you get a full thyroid panel?  Do you have high thyroid antibodies?  Even a small amount of thyroid replacement can really help your symptoms like fatigue.   

 

Your doctor may very well be correct about the adrenal fatigue (did you get tested for mono?)  In any case, get some rest!

 

Welcome to the board and keep us posted!  If you do test positive for celiac disease, this site has plenty of information on how to successfully go gluten free.

[1desperateladysaved]

I hope your tests prove definitive.  Sorry to hear you are ailing.

 

I am blonde, (or was my hair has darkened) and I have 4/4 genes for celiac.  I was born with blue eyes, but they are hazel now.

 

I had brain fog, tremors (It seems as if that was low magnesium), and fatigue.  I have been gluten free about 18 months and I am better from these.  I hope that you will soon be able to tell a story like that.

 

Get Well,

D

[student314]

Oh my goodness. I don't have any answers for you, but I just wanted to say that some parts of your story are a literal reflection of what I dealt with a month and a half ago. I didn't collapse, but I came very close and it took me a week to be able to get out of bed. I would only be able to stand up for a few minutes at a time--Any more than that and I'd come close to passing out. I had the on and off dry mouth too. I chugged and chugged water and gatorade, but my tongue and mouth were so white and dry. We thought I just had a stomach bug, but I've had lingering repercussions like the weight loss, feeling weird and anxious after eating, among other things. I'm hopefully getting tested tomorrow as well. I wish you the best of luck in figuring all of this out!!

[nvsmom]

I used to get hypoglycemic type symptoms quite frequently before I was diagnosed. I would get light headed and the shakes unless I ate every couple of hours.  I can't be sure if feeling better is due entirely to the gluten-free diet, or the fact that I am going lower and lower carb as time goes on - I feel MUCH healthier when I eat fats, adequate proteins, and some healthy veggie type carbs (no starches).

 

As the others said, get tested before going gluten-free. The tests are:

tTG IgA and tTG IgG

DGP IgA and DGP IgA 

EMA IgA

total serum IgA (a control test)

AGA IgA and AGA IgG (an older and less reliable test)

 

Once you're done testing, try to lower your carbs. With carbs that heavy, your blood sugar is doing some huge swings. Try bacon and eggs for breakfast, and cut back on the pasta... A food and symptom journal would probably help you see trends easier too.

 

Good luck, and welcome to the board.

[w8in4dave]

My Daughter MIL was having seizures, Thats when they found out she had Celiac. 

My daughter get Hypoglycemic when she eats Gluten.... Gluten does funny things to people! I wish they would just keep it out of food!! But we all know that is not going to happen

[Kreative]

Hi everyone,

 

Thank you so much for the replies. 

 

A couple of things I'd like to add following some of your replies:

 

- I've had tests done for mono, strep throat and hepatitis (all of these tests were negative). The doctor told me I had mono at some point in my life (probably childhood) so I don't think that's what's bothering me.

 

- For my thyroid I've only had the (TSH?) values on my blood test. They were slightly higher (hypo) but nothing extreme and the doctor told me this could be a bounce-back from the stress I was under (worrying about my health problems only made things worse). He suggested to test it again in 2 months (which seems like a long long time).

 

Wether I have celiac or not I expect stress to be the trigger for my current onset of problems (since it weakens the immune system) I've also been walking around with an untreated tooth infection for quite some time (which probably didn't help) but my bloodwork didn't show any sign of infections so I don't think this really bothered me. I've had a treatment for this a couple of weeks ago..

 

Anyway tomorrow I'll be getting the results from my celiac blood work, I've done another allergy test to identify specific food allergies (quite expensive but it could be worth it) with the results arriving next week. Another symptom I'd like to add is some sort of chronic hunger that I'm getting after eating meals that are high in carbs / gluten (it's like a vicious circle). I've had my yoghurt - fruit - egg breakfast again this morning and I do feel better compared to oatmeal.

 

I'm investigating vitamin deficiencies, my blood showed sufficient iron and in addition I've taken magnesium tabs. I also read that B12 could really help with things like tremors / brain fog so I've ordered a B12 supplement. All I can do now is wait .

 

I've reduced my exercise schedule for now (I'm actually not really in the mood for it at the moment). These problems are also affecting my personal life, I've resigned from my job yesterday and I'm planning to move back in with my parents until I'm fully healed. All of this is really weird for me, I can't remember having anything (a cold, flu) for the last 7 years, people always commented on my physical health but now I'm a bit of a wreck (both mentally and physically).

[nvsmom]

Stress is trigger for many people.  I always felt worse when stressed too; now that I am gluten-free, I don't feel my best when stressed, but it doesn't bring me as low as it used to. Lack of sleep does it to me too.

 

Celiacs are often low is B12, B6, B2, Magnesium, D, calcium, A, iron, ferritin, zinc, and copper. Get those tested if you can.

 

Definitely stay on top of that thyroid testing. My TSH bounced in and out of normal range for well over a decade before it finally got high enough for doctors to treat me.  DON't trust just a TSH test; their range is too broad and most people feel best when TSH is near a 1 - I feel best when mine is well below that. Request Free T3 and Free T4 tests too; they should be in the 50-75% range of your lab's normal reference range. When my TSH was in the teens, my FT3 was at about 20% of my lab's reference range - I felt pretty poorly even though "technically" I was normal. ... See what I mean?

 

You may be in for a fight with the thyroid testing. Not many doctors are flexible when it comes to thyroiditis treatment.  Good luck!

[Kreative]

Hi guys,

 

The doctor just called me to come over tomorrow morning so I'm 99% sure my celiac bloodwork was positive (since it's the only thing I was tested for and they don't call if it's not worth it). I feel a bit of a relieve even though it's gonna be a long battle.  

[w8in4dave]

I will cross my fingers you find the answer to your problems. At least they are talking to you. I heard over the phone I was Celiac and I havn't seen my doc since. It has been 3 months. So your going to get some answers hopefully!! Yay!! 

[CeliacInSenegal]

Blonde and blue eyed could make you more disposed to Celiac, only because it's supposed to be most prevalent in northern Europeans, who tend to have a lot of blue-eyed blondes. I happen to fit that description as well. I've also had the same experience as you where I can feel tired and low energy in daily life, but then when I workout, I get a burst of energy and can workout quite hard. I'm wondering if that might not be a hormonal issue (maybe low dopamine or something?). I've just started B12 supplements to see if that will help at all.

 

Let us know what the doc says!

[cyclinglady]

Hi guys,

 

The doctor just called me to come over tomorrow morning so I'm 99% sure my celiac bloodwork was positive (since it's the only thing I was tested for and they don't call if it's not worth it). I feel a bit of a relieve even though it's gonna be a long battle.  

That's great that they'll discuss it with you in person.  I just got a phone call and literally no support.  Since my husband's been gluten-free, it wasn't an issue for me, but I really feel for those who are just thrown into this diagnosis.   Keep us posted.

[w8in4dave]

Blonde and blue eyed could make you more disposed to Celiac, only because it's supposed to be most prevalent in northern Europeans, who tend to have a lot of blue-eyed blondes. I happen to fit that description as well. I've also had the same experience as you where I can feel tired and low energy in daily life, but then when I workout, I get a burst of energy and can workout quite hard. I'm wondering if that might not be a hormonal issue (maybe low dopamine or something?). I've just started B12 supplements to see if that will help at all.

 

Let us know what the doc says!

Really? Thats the 1st I heard that. I am dark hair blue eyes... Altho my Grandson has Celiac, he is Light hair Blue eyed. His eyes are a very light blue.