Could This Be Celiac? My Symptoms

[tootired]

Recently I started to suspect food allergies. Here is my story.

Ive had chronic fatgiue starting about 8 years ago. Im 41 years old now.

4 years ago it got so bad I could barely get up for work and decided I had to try something.

Exercise made me exhausted, but I said screw it, Ill push through it, and took up wrestling.

The first year was hell, but my body slowly got stronger and healthier. Its the only thing that made me feel any better. But its really hard doing something that physically demanding when you feel so tired all the time.

I visited a chronic fatigue specialist/cardiologist.

He tested me for EBV, which showed that I used to have it at some time in the past pretty severely but that it was currently not active.

Also got VO2Max tested, with EKG attached, and my heart showed that it was perfectly healthy and I was in good shape.

2 years ago I visited a hormone specialist. Although my thyroid numbers were in range, he knew lab ranges are ridiculously wide, and suspected I had an under active thyroid. My testosterone levels were also lower than the median 65 year olds. So he put me on 1 grain of thyroid, and as an experiment, gave me low dose of testosterone to bring it closer to the middle range for a 40 year old. I did this for about 6 months and it made me feel just a little bit better. I still had no endurance, energy, and horrible recovery times and fatigue though. Maybe a 10% improvement. I stopped both since they made little difference.

Its been 8 years now and I still have fatigue all the time with cycles of extreme debilitating fatigue.

The last 2 weeks have been hell. Its only a matter of time before I lose my desk job like this.

Summary of current symptoms

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Fatigue - moderate to extreme in cycles

Horrible recovery times. Even when feeling decent, 2 days of healing minimum for any exercise event. Sometimes exercise takes me out for a week.

When I feel really fatigued, I always have sunken dark half moons under my eyes

Brain fog = moderate to extreme, in sync with my fatigue. Cant think = cant work.

Shortness of breathe. Lose it walking up stairs when the fatigue is in full affect

Body/muscles get randomly sore when in fatigue mode

Fatigue hits hardest 2 days after exercising

I almost always have a lunch coma and it takes about 4 hours to recover from

Stools are ok

No gastro pain/issues

I have a low WBC count - but I rarely get sick

Horrible endurance, although I can wrestle hard for 1-3 five min matches, a 30 min walk is much much harder for me. Take me to the mall to shop for 2 hours and you will KILL me

I also suspect a possible yeast allergy

Drinking a single glass of wine wipes me out, so I avoid it with friends or im too tired to even speak.

In my mid twenties, I drank a DARK beer at a club once, went home, and experienced the most painful migraine of my life. Eye/head stabbing pain, followed by projectile vomit, and then felt better after puking.Total alcohol for the night was half of one dark beer. I dont get migraines.

Did some research and found out the light beers (that dont bother me) and dark beers use different types of yeast in brewing. Hmmmm.....

Im middle eastern and believe im slightly lactose intolerant as well. I avoid all dairy. I can drink a glass of milk once in a while and im fine, but I will get gastro problems if I have too much. I do eat cheese though and it doesnt seem to bother me.

Im at the end of my rope with the fatigue again. I dont have enough energy to hold a job, a relationship, or to do anything fun anymore after work or on the weekends.

Ive never had a skin or RAST or any other allergy test. Looking for a doc now in the Raleigh, NC area.

In your experience, would the above make you suspicious of celiac???

I gotta solve this. This isnt living.

[*lee-lee*]

i'm no expert but generally my opinion is, why not get tested? what's it going to hurt? they take some blood (make sure they run a full Celiac panel) and you'll know in a week or two. i say, call your doctor to order that test!

many people have a lot of the same symptoms you have. it's important to point out that just because you don't have GI issues, does NOT mean you can rule out Celiac. some doctors think that but its simply not true.

[tootired]

Ive got a call in to a doc to make an appointment.

I was just curious to hear from people who have studied this inside/out for years :wink:

Ive been researching like crazy for a week, and only recently have discovered that a lack of gastro problems does not always equal a lack of celiac

So yeah, im definitely getting tested. Ive had just about everything else tested except lyme.

If the food stuff comes up all negative. Then ill get a lyme test.

Thats all I have left to test that im aware of.

In a way, I really hope its celiac, because then ill have something I can actually do about it.

My fatigue has robbed me of my life, I cant take it anymore

[*lee-lee*]

I a way, I really hope its celiac, because then ill have something I can actually do about it.

that's how i thought about it too. my diagnosis came relatively quickly after i initially suspected it but i did suffer for a year of pretty bad joint pain in my hips that no one could figure out. if not for my increasing GI issues, i'd probably still be hobbling around on a couple of bum hips! as other symptoms starting clearing up, i put it all together and attribute many of my ailments to Celiac.

there are 4 tests you should make sure the doctor orders:

- Anti-gliadin antibodies (AGA) both IgA and IgG

- Anti-endomysial antibodies (EMA) - IgA

- Anti-tissue transglutaminase antibodies (tTG) - IgA

- Total IgA level

and continue consuming gluten until all the tests are completed...this includes the biopsy if it gets to that point. if you have Celiac and once you go gluten-free, your intestines will begin to heal. if this goes on long enough and then you have the biopsy there might not be enough damage for a concrete diagnosis.

good luck...i hope you get the answer you want! and keep reading this board - there is a ton of great info and advice!

[Mother of Jibril]

Lyme and celiac are great ideas to check out. Even if the celiac test comes back negative, you might want to give the gluten-free diet a try to see how you feel. It can't hurt anything.

Also... what about anemia? Deficiencies (iron, B-12, vitamin D, magnesium, etc...) are common in people with malabsorption problems and can definitely cause fatigue. A metabolic panel and a CBC would be a good place to start. You could have that done at the same time as the celiac panel.

One last thought... a lot can happen to your thyroid in two years. It's not very expensive to test your TSH. You could also have a problem with your adrenal glands and/or pituitary gland. Along with the thyroid, those glands help regulate your hormone levels.

I'm sorry you feel so bad. I hope you start finding answers very soon.

[tootired]

The GP-Doc blood panels ive had were useless, they were the minimum.

But the specialists I have seen did multi-page blood panels and everything looks good except what I have already mentioned, if I remember correctly. Ill double check the results for anemia.

I plan on going on a strict elimination diet after x-mas as an experiment regardless of what all tests say.

[tootired]

Seeing a GI today. Crossing fingers

[nasalady]

Seeing a GI today. Crossing fingers

Another thing to think about...although it's unusual for a man to have fibromyalgia, your symptoms sound very familiar to me (I have fibro). My son-in-law has just been diagnosed with fibromyalgia; it took them years to figure it out, because he's male and it's just not the first thing a doctor would think of.

You might want to ask your doctor if this is a possibility?

Good luck!!

JoAnn

[tootired]

Another thing to think about...although it's unusual for a man to have fibromyalgia, your symptoms sound very familiar to me (I have fibro). My son-in-law has just been diagnosed with fibromyalgia; it took them years to figure it out, because he's male and it's just not the first thing a doctor would think of.

You might want to ask your doctor if this is a possibility?

Good luck!!

JoAnn

The symptoms for fibro and CFS are very similar with some key differences. I definitely line up with the CFS systems best though.

Anyway.... the doc seemed to think I was on the wrong track because I dont really have any GI symptoms. But he ordered a celiac panel, and I hopefully will hear something next tuesday.

He seemed totally baffled, but didnt blow me off, and was concerned that id have a hard time finding any doc that would work with me over a long period of time to figure this out.

I think he is going to refer me to an allergist next if the blood comes back all negative.

Going to try an elim diet regardless.