So Confused. Celiac Or Not

[realmaverick]

Hey guys,

As some of you will know, my Dr sucks and after a negative test for Hypothyroidism, he didn't want to test for Celiacs. So I did 2 home tests with the Biocard. Which is the same procedure that most labs will use. Both tests were positive. The tests, test for gluten antibodies in your blood. If you have them, I cannot see why other than celiacs?

I followed a gluten free diet for 8 weeks. I still feel really tired. I then received a letter through the post, asking me to go for a follow up appointment at the Dr's, so I went along and explained what I'd been doing. He said he doesn't know how accurate these home tests are, and he seemed doubtful that I had celiacs, because my B levels were average and my iron, though bottom end of normal, I still had a normal blood count.

So I thought screw this, I went to Mcdonalds and had a big mac, expecting that if I do have celiacs, I'd instantly be crippled over in pain. However, I wasn't. I got terribly bloated, like I've never really had before. Slight stomach discomfort and today my fatigue is so bad, I've just got out of bed at 6pm. But I don't know what to think now. I don't have diarrhea and didn't get terrible stomach pains.

I asked to see the Hypothroidism test results. But only one reading was taken and it was 0.7. I think it was TSH? Hmmm. As he said it was normal. I'm guessing nothing to concern myself with there.

I hate my Dr for putting me in this position. I don't know what to do next.

Thanks for any advice.

[realmaverick]

I've just been reading a little on thyroid. Apparently it's possible to have a normal TSH reading but still have issues. Secondary hypothyroidism etc. But I'd need to get my other levels checked.

The stupid, darned, idiot of a Dr, should be working a little harder with me, to find out why I'm exhausted to the point I cannot work. I could cry right now!

[lovegrov]

You don't have to have diarrhea or stomach pains for it to be celiac. The symptoms you did have could be celiac. But is it really celiac? I can't say.

richard

[jerseyangel]

Gosh, I'm so sorry you're having to deal with all this. I don't know how accurate the home tests are, but if 2 of them came up positive for the antibodies, I would think that means something.

Also, Richard is right that not all Celiacs get diarrhea or even any GI symptoms. My thyroid testing has always been in the normal ranges--even at my sickest except for once right before I was diagnosed when it was borderline low. It normalized again within 6 months gluten-free.

I do know that the fatigue can take a while to abate--it took me a good 18 months before I was not tired all the time and for my more emotional symptoms to improve. It's sometimes a slow process and it's hard to predict how any one of us will respond--it depends on how damaged your system was, how quickly you heal in general, how long you have had Celiac--you could have had it for a period of time and been asymptomatic.

How are you doing with your elimination diet?

[realmaverick]

Thanks guys for the replies.

From what I can find online, Biocard is very accurate. As accurate as the lab tests.

Elimination diet I stopped, as I just wasn't eating. I figured it was healthier to at least eat. I'm still gluten free, minus the Big Mac.

I have been tired now since I was 13-14 so we're talking 16-17 years. I struggled all through school, with constant tiredness, often just day dreaming or trying to fall asleep with my head on the desk. I was told that's normal for teenagers, though none of my friends had the same issue. No tests were done.

I have gotten progressively worse I'd say. Right now, I feel as though I've been drugged. My brain just feels completely underpowered. Brain fog is horrific.

I do often have diarrhea but I've not actually been to the toilet since I eat the big mac over 24 hours ago. Strange.

I also have a horrific headache right now. I feel like lost cause.

[jerseyangel]

I feel like lost cause.

You're not

Right now you are probably feeling the effects of the Big Mac. How about supplements? Do you take any?

[realmaverick]

Hi Patti, I do. But apparently my B levels and Iron are OK. But I take B vits, Multi vit, Iron, Fish oil, Pro Biotics, digestive enzymes.

Googling makes me feel like a hypocondriac. But I was just researching adrenal fatigue. Which I suspected because when my adrenaline kicks in, before a race, exam or whatever, my arms and legs go numb and I feel extremely light headed and almost lose all feeling in my body. It's always felt extremely over reactive.

Symptoms are:

excessive fatigue and exhaustion

non-refreshing sleep (you get sufficient hours of sleep, but wake fatigued)

overwhelmed by or unable to cope with stressors

feeling rundown or overwhelmed

craving salty and sweet foods

you feel most energetic in the evening

a feeling of not being restored after a full night's sleep or having sleep disturbances

low stamina, slow to recover from exercise

difficulty concentrating, brain fog

Also often have hypoglycemic feelings where I NEED sugar. i go light headed, shake and feel weak. Eating sugar quickly resolves it usually.

All of which I experience. Not sure I want to approach my Dr, for tests. As he looks at me like I'm crazy. He somehow doesn't feel the need to get to the bottom of this.

[mushroom]

It's not just your B vitamins you should worry about? Do your know our levels of D, A, E and K? By your B's I'm assuming you include B12 and folate? Have you had your potassium, zinc, calcium checked? These levels are all important and few doctors check them unless asked. And you should get copies of all your test results, because what a doctor may consider okay, i.e., low normal, may not in fact be okay. You really need to be mid-range in these things to feel at your best. I never trust a doctor to just tell me everything is okay.

[lynnelise]

I would say the bloating and brain fog are indication enough. Strangly before going gluten-free, back when everything under the sun gave me diarrhea McDonald's food did not. In fact it was the only place I could eat on road trips...Go figure.

Also not all of my glutenings have been the same. Usually I get hit by CC and get diarrhea within an hour...Then one day I ate 1/4 of a burger before I realized the mushrooms were actually gluten containing mushroom gravy so I got a good dose of gluten and no diarrhea...just brain fog, fatigue, and bloating.

[realmaverick]

Thanks Mushroom, though I feel reluctant to ever go back to the Dr's again. I think I'm going to go private.

Iynnelise, you're right. I accidentally eat gluten in a sauce, and within an hour I was in agony and had terrible diarrhoea.

I figured eating a whole big mac, would be such a big dose I'd be a lot worse.

All so confusing.

[cap6]

Brain Fog or celiac brain as we call it around here. It got worse after being diagnosed. Slowly gets better. I think that we want it all now. Want to feel good now.... it took us years to get to this point and will take awhile to get completely well again. Easier said than done I know.

[WheatChef]

Getting drained of energy after a glutening is probably the most reliable reaction for most people around here along with the bloating. You may get D, you may get constipation, or you might just get some cramps but that tiredness seems to happen most every time. Since the elimination diet seems to be a little difficult right now you should try the milder approach of making a food journal to plot minor/major digestive, health and mental issues along with what you've eaten each day. After a decent amount of entries into the journal you can use it to try and analyze possible associations between occurrences of symptoms and you diet for that week. Alternatively you can go with a nice little ABAB design self study where you go heavy on consumption of a type of possibly offending ingredient for a week or two (A) then completely drop it from your diet for the next two weeks ( then go heavy again (A) and once again remove it from the diet (technically BCBC for psych nuts). Sometimes the gradual changes like going from eating 5 eggs a week to none are harder to notice than more severe contrasts like going from eating 40 eggs to none.

Additionally considering some of the symptoms you mentioned, you may wish to eventually play around with your carbohydrate consumption levels some in the same ABAB fashion mentioned above.

[Roda]

Did they check your ferritin level? I was severely deficient in ferritin with a normal blood count and was vitamin D deficient also. With both levels raised I feel good! To get a complete thyroid test you need a TSH, free T3, free T4 and thyroid antibodies.

[i-geek]

My big, full-on "glutened" symptoms are usually migraine headache, bloating, constipation, and intense fatigue (this was my life for the months before I went gluten-free). I seem to get D more often with smaller doses (i.e. cross-contamination)- maybe my body tries to flush those out, but with a bigger hit it seems like my gut can't deal with it all and instead just shuts down for a few painful days.

[realmaverick]

Did they check your ferritin level? I was severely deficient in ferritin with a normal blood count and was vitamin D deficient also. With both levels raised I feel good! To get a complete thyroid test you need a TSH, free T3, free T4 and thyroid antibodies.

No, those were not checked. He didn't check free T3 or T4 either. Nob.

My big, full-on "glutened" symptoms are usually migraine headache, bloating, constipation, and intense fatigue (this was my life for the months before I went gluten-free). I seem to get D more often with smaller doses (i.e. cross-contamination)- maybe my body tries to flush those out, but with a bigger hit it seems like my gut can't deal with it all and instead just shuts down for a few painful days.

That was my experience exactly. I had a little gluten last week and ended up with D and terrible cramp. Since the big mac, I've not been to the toilet. Even after I had a Costa Latte, which usually makes me need the toilet within 10 minutes. Crazy.

[Marz]

Hi there,

My glutenings are completely random - sometimes insane D, sometimes C for a few days followed by D. I always get a headache, tiredness, anxiety, crying over anything though. I think a big hit of wheat seems to "shut down" the whole system, whereas a small dose will damage just enough to get D.

Unfortunately one dose of McD won't really give you proper results - a proper "gluten challenge" would be plain cream of wheat or some other single-ingredient food, eaten 3 times a day or so. Then you'll know if you're intolerant to gluten, because you'll probably get pretty sick very quickly

I ate semolina for breakfast and after lunch for 2 days in a row for my gluten challenge, and felt so *weird* I just had to stop, I also didn't notice that much D, but boy did I want to crawl out of my skin. Now accidental trace glutening causes bad nausea, stomach ache, D etc etc.

[realmaverick]

Thanks guys, I feel much better, knowing my symptoms were quite typical.

[JDA7876]

I've just been reading a little on thyroid. Apparently it's possible to have a normal TSH reading but still have issues. Secondary hypothyroidism etc. But I'd need to get my other levels checked.

The stupid, darned, idiot of a Dr, should be working a little harder with me, to find out why I'm exhausted to the point I cannot work. I could cry right now!

I've had fatigue like you are experiencing!! You need fresh ginger root from the produce section of your grocery store, read about ginger it is a miracle food and give me the energy I so desperately need everyday. You can just cut it up in peices and put it in hot water, let it sit for 5-10 mins, and drink away, add honey. You will be AMAZED!! It is also a digestive aid, I drink ginger tea after every meal, and when I accidently on purpose eat food containing gluten, it stops the pain...

keep me posted!

[realmaverick]

JDA7876 I'm definitely up for trying it. Thanks for the tip. I've not heard of ginger as an energy aid. I miss ginger biscuits