[skyrune83]

Hello everybody!

My best friend and roommate has had issues recently that he discovered might be related to gluten intolerance.

The main symptoms he was having were:
1.) No weight gain (He is 6'1", and only weighs 125 pounds)
2.) Bad breath (smells like rotten seaweed)
3.) Very tired all the time
4.) Occasional mood swings / depression
5.) Pale irregular stool / diarrhea

Well, we both thought it sounded very simliar to gluten intolerance symptoms, so he had a test done at the doctor's. The test came up negative, but we thought the test only had a 75% certainty.

But he's gone gluten-free as of a couple weeks ago, and he says he has a little more energy, and his stomach feels better. And most notably, he feels much hungrier than before.

I guess I wanted to know if this really is gluten intolerance, or if it could be something else.

----------------

Also, if it IS gluten intolerance, does that mean he can't have even the slightest amount of gluten ever again? He read somewhere that it can take many months to recover from the damage of gluten. I wanted to have him try some St. Louis style pizza in a couple weeks as a one-time thing, but will this "break the cycle," thus having to start all over again?

Thanks for any advice! We are both rather confused atm.

[Tallforagirl]

skyrune83, on Mar 11 2009, 01:43 PM, said:

The main symptoms he was having were:
1.) No weight gain (He is 6'1", and only weighs 125 pounds)
2.) Bad breath (smells like rotten seaweed)
3.) Very tired all the time
4.) Occasional mood swings / depression
5.) Pale irregular stool / diarrhea

These all could be symptoms of celiac disease but equally they are vague enough that it could be something else or a number of separate causes.

skyrune83, on Mar 11 2009, 01:43 PM, said:

Well, we both thought it sounded very similar to gluten intolerance symptoms, so he had a test done at the doctor's.

What test did the doctor do exactly? Was it the full Celiac blood test panel? This includes:

Anti gliadin IGA
Anti gliadin IGG
Anti endomysial antibodies (EMA)
Anti tissue transglutaminase IGA (tTG IGA)
Total IGA (not a test in itself for antibodies, but if your total IGA is below normal levels, all other IGA based test results will be negative by default).

If the doctor did do the full panel and results were negative, then he/she should be doing some further investigations to find out what’s causing your friend’s symptoms. If your friend still thinks the cause could be celiac disease then he can still pursue a diagnosis, and ask his doctor to arrange an endoscopy to take biopsies to examine for damage to the intestine. A significant number of celiacs test negative to blood tests, but are found positive on biopsy.

skyrune83, on Mar 11 2009, 01:43 PM, said:

But he's gone gluten-free as of a couple weeks ago, and he says he has a little more energy, and his stomach feels better. And most notably, he feels much hungrier than before.

I guess I wanted to know if this really is gluten intolerance, or if it could be something else.

No-one on this board can give you the answer to that question, no matter what they might say.

I would urge your friend to pursue this with his doctor, make sure he has done all the necessary testing for celiac disease and explored all other possibilities. He shouldn’t go gluten-free until all tests for celiac disease have been completed.

skyrune83, on Mar 11 2009, 01:43 PM, said:

…if it IS gluten intolerance, does that mean he can't have even the slightest amount of gluten ever again? He read somewhere that it can take many months to recover from the damage of gluten. I wanted to have him try some St. Louis style pizza in a couple weeks as a one-time thing, but will this "break the cycle," thus having to start all over again?

IF it is celiac disease then you’re right, he can’t consume even a tiny amount of gluten, ever again. This is why it’s important for him to get fully and properly tested.

If he is gluten intolerant, whether it is celiac disease or not, he’ll need to stay away from gluten to feel well.

[skyrune83]

OK, well I have a bigger problem now... I've asked and asked and asked my friend to call his doctor up and ask what test was administered by his doctor, but he is literally making excuses left and right for not calling the doctor back "He's too busy," "I don't like talking on the phone," etc. And just now he said "If I remind him about it he'll probably tell me to come back and have more expensive scary tests done."

I don't know how to help him anymore. I'm really starting to lose patience. He has no job right now, so I am helping out by buying him gluten-free foods. But gluten-free foods are EXPENSIVE, and my wallet is hurting. I don't want to be buying these foods if he does NOT have gluten intolerance. But he's apparently too scared to get the tests done.

What should I do? And are there any tests that aren't "scary" that he can get done?

[ravenwoodglass]

skyrune83, on Apr 10 2009, 11:27 AM, said:

OK, well I have a bigger problem now... I've asked and asked and asked my friend to call his doctor up and ask what test was administered by his doctor, but he is literally making excuses left and right for not calling the doctor back "He's too busy," "I don't like talking on the phone," etc. And just now he said "If I remind him about it he'll probably tell me to come back and have more expensive scary tests done."

I don't know how to help him anymore. I'm really starting to lose patience. He has no job right now, so I am helping out by buying him gluten-free foods. But gluten-free foods are EXPENSIVE, and my wallet is hurting. I don't want to be buying these foods if he does NOT have gluten intolerance. But he's apparently too scared to get the tests done.

What should I do? And are there any tests that aren't "scary" that he can get done?

Is he still making progress symptom wise on the diet? You really don't need a doctors permission to go gluten free. There are some of us that also have neurological impact which can cause depression, anxiety and other issues. He may be struggling with that and it may ease up a bit after he has been gluten free for a while. Try to be patient with him and if he is unemployed has he checked into getting food stamps? He doesn't have to apply for cash assistance if he doesn't want to.
There are many foods that are naturally gluten free and you can keep down the expense a bit by going with a more whole foods diet and limiting the amount of gluten-free specialty foods. Plain fresh meats and chicken, rice, wild and white, single ingredient frozen veggies and fruits etc. The only gluten-free specific items I use are my Kinnickinnick bread and waffles and once a month or so I get a cake mix and some Kinnickinnick pizza shells. That helps to keep the cost down for me.
He does need to know that if he wants a doctor derived diagnosis he HAS TO STAY ON GLUTEN until the testing is all done with. There is Enterolab testing that looks for antibodies and signs of malabsorption in the stool. It most likely would not be covered by insurance but that could be another diagnostic tool if he is firmly against the biopsy route.

[skyrune83]

Well, here is an update on his progress:
1.) He has been eating all non-gluten foods for a month, except for one or two burgers somewhere in the middle. His appetite has practically doubled from what he used to eat. However, at the end of the month, he LOST a pound. He's 6"2 and only 124 pounds, so we're desparate to put some weight on him.
2.) In general, since he started his "practically gluten-free" diet, he has been less gassy. However, he still does have gas after some meals. I told him to stop drinking so much soda because of the bubbles. Even without soda, he still has gas. He thinks it might be lactose intolerance - he said gluten intolerance can cause (temporary?) lactose intolerance.
3.) He tested himself a week ago at Burger King: He ordered a whopper with cheese and fried onions, and he counted the number of, um, gasses expelled in various places. Let's just say it was a lot.

So here are my questions:
1.) Since he lost weight even after eating 98% gluten-free foods for a month, could there be a different issue here?
2.) I read somewhere that DIET sodas cause gas. Is this true for regular sodas too? Regular is what he drinks.
3.) What's the scoop on this possible gluten-lactose intolerance link?
4.) Any idea if the same foods he's intolerant to are also the cause of his bad breath? Every once in a while his breath is better. And I know his dental checkup came up clean. Can being intolerant to lactose and/or gluten cause bad breath?

[GFinDC]

1.) Since he lost weight even after eating 98% gluten-free foods for a month, could there be a different issue here?

Certainly it could be a different problem. For one he hasn't been diagnosed with celiac. For another he hasn't followed the diet strictly for long enough to see a good result. Cheating every couple weeks is not even going to do it. He needs to be serious and really stick to the gluten-free diet 100% always to see if it makes a difference. It may turn out not to be the problem though so he should see a doctor.

2.) I read somewhere that DIET sodas cause gas. Is this true for regular sodas too? Regular is what he drinks.

I think this is true of all sodas, they have gas in them after all.

3.) What's the scoop on this possible gluten-lactose intolerance link?

Celiac damages the villi in the small intestine, The villi are little fingerlike projects of tissue that line the inside of the small intestine. They absorb nutrients and also make the lactase enzyme that breaks down dairy sugar (lactose). Them be gone then the lactase enzyme be gone too and gas and other non fun stuff ensues.

4.) Any idea if the same foods he's intolerant to are also the cause of his bad breath? Every once in a while his breath is better. And I know his dental checkup came up clean. Can being intolerant to lactose and/or gluten cause bad breath?

There is a thread on bad breath right down the page a ways in this forum. From reading it, it seems the consensus is yes it can.