Looking For Support And Hopefully Answers

[Buffheart]

Hi all! I am not new to this site, but I think this is my first post. As I didn't see a "new members" forum I thought I would post here. I am 20 years old and last year I was tested for Celiac. The blood tests came back indicating something was up, but the endoscopy showed no signs of damage. There is no family history of Celiac, so my doctor said maybe I just have gluten sensitivities/intolerance. That leaves me with several questions:

1. Why would my blood test come back strange, but my endoscopy show no signs of Celiac?

2. Can I have many symptoms of Celiac without actually having it?

3. How come some days I can have all sorts of gluten and have no issues, but other days even the tiniest bit will set me off (bloating, cramps, and upset stomach)?

4. Is it common to have lactose sensitives and gluten sensitivities? I am beginning to suspect I might be sensitive to lactose as well because sometimes after drinking milk or eating yogurt I will become very bloated, crampy, and have an upset stomach.

5. How come my stomach is super sensitive? I cannot wear tight pants, tight belts, and I cannot lay on my stomach without getting the above listed symptoms.

Please let me know if I am posting this on the wrong forum!

[mushroom]

Hi Churk, and welcome.

I am not a teen or even a YOUNG adult, but will try to give you some answers.

1. Blood tests and biopsies often do not correlate. We don't know why. Sometimes it is because the endoscope does not go very far into the small intestine and the damage is beyond its reach. Sometimes it is simply a false negative. False negatives are common; false positives are uncommon.

2. Celiac is a form of gluten sensitivity. It is the one form for which there are specific tests. There are other forms, including the neurological kind which often give you symptoms similar to MS, referred to as gluten ataxia. If a neurologist knows about gluten ataxia he can often diagnose you as being gluten sensitive from recognizing lesions on the brain called UBO's (Unidentified Bright Objects) seen on MRI which cause the gluten ataxia symptoms but are not MS. Other neurological symptoms include migraines, brain fog, depression, lethargy. Some people have all the abdominal symptoms but still test negative on blood, biopsy, or both. There is apparently another reaction to gluten besides the specific antigliadin antibodies and flattening of the villi.

4. If the gluten has caused damage to the villi in your small intestine you will be unable to digest lactose because the enzyme for it is made at the tips of the villi which are destroyed by gluten (they do grow back once gluten is withdrawn).

5. When your small intestine and stomach is inflamed by the reaction to gluten it has a very hard time digesting anything. Food sits around and emits gas which causes bloating, which means your clothes do not fit When you lie down at night your abdominal contents rearrange themselves and frequently cause bloating and pressure.

[Buffheart]

I had two regular blood tests come back negative and one in depth blood test come back positive. Why is this?

My doctor said to come back to see him in a few months. Since I started eating more gluten free I have not had as much bloating/cramps and it doesn't last long, but I have still had some. Admittedly I have not gone totally gluten free because I live with my parents and they still buy a lot of gluten foods, especially my father. My mother is better, but I do not get along with them much and they say that since I don't need to go gluten free because I am not allergic, then I don't need to buy only gluten free foods, which I do with the little amount of money I have. So it's hard trying to eat gluten free when I am surrounded by gluten.

My GI doctor said if my symptoms continue that I should see him and he might have to do a colonscopy, but I hope it doesn't come to that.

Hi Churk, and welcome.

I am not a teen or even a YOUNG adult, but will try to give you some answers.

1. Blood tests and biopsies often do not correlate. We don't know why. Sometimes it is because the endoscope does not go very far into the small intestine and the damage is beyond its reach. Sometimes it is simply a false negative. False negatives are common; false positives are uncommon.

2. Celiac is a form of gluten sensitivity. It is the one form for which there are specific tests. There are other forms, including the neurological kind which often give you symptoms similar to MS, referred to as gluten ataxia. If a neurologist knows about gluten ataxia he can often diagnose you as being gluten sensitive from recognizing lesions on the brain called UBO's (Unidentified Bright Objects) seen on MRI which cause the gluten ataxia symptoms but are not MS. Other neurological symptoms include migraines, brain fog, depression, lethargy. Some people have all the abdominal symptoms but still test negative on blood, biopsy, or both. There is apparently another reaction to gluten besides the specific antigliadin antibodies and flattening of the villi.

4. If the gluten has caused damage to the villi in your small intestine you will be unable to digest lactose because the enzyme for it is made at the tips of the villi which are destroyed by gluten (they do grow back once gluten is withdrawn).

5. When your small intestine and stomach is inflamed by the reaction to gluten it has a very hard time digesting anything. Food sits around and emits gas which causes bloating, which means your clothes do not fit When you lie down at night your abdominal contents rearrange themselves and frequently cause bloating and pressure.

[mushroom]

Was your positive result your latest result? Were you still eating a full gluten diet when you had the two negative tests?

Could you give us some more information about your testing, including the dates, results, lab ranges? This would be informative.

[Buffheart]

Yes, my positive result was my latest result, but that was back in June 2010 and yes I was still eating gluten when I had the two negative results. I was told not to change anything until after my endoscopy, which was back in August 2010.

I don't have the information on my tests other than I had my last blood test done late May 2010 and the results came back a few weeks later. Maybe two weeks, though I don't remember. And they had to draw a lot of blood because they ran several tests. I don't have the results other than one, maybe more, indicated possible Celiac. None of them were 100% yes, which is why I had the endoscopy. I don't know what a "lab range" is.

My endoscopy was fine. I even have the pictures and they looked okay to me, but I am no expert. The doctor said he didn't see any signs of damage, though he did find polyps on my vocal cords, but they went away on their own. Can polyps explain anything? The doctor said he doesn't know what caused them, but as they went away on their own he said it wasn't cancer.

[mushroom]

Each laboratory has its own "range" for test results, i.e., the numbers of (in this case) gliadin antibodies found in a specific measure of blood. To give a hypothetical example, a range of 1-4 may be negative, 5-9 mildly positive, and 10 and over definitely positive. I would presume that one or more of your scores on the celiac panel (there are normally several different tests performed) was in the mildly positive or possible range. Many people who score in this range later go on to have positive testing after they have done more damage to their intestine. If your test scores are getting progressively higher I personally would take this as a sign that gluten is starting to do more damage and pretty soon you would have a positive biopsy. I believe the finding of the polyps was probably incidental and not significant. Why don't you give the gluten free diet a very strict trial to see if it helps you. I don't know what your symptoms are, but if you have the bloating I am assuming you have some gastric distress and would be able to judge whether it makes a difference for you or not. You can't really tell anything with gluten "lite" because even a little bit of gluten can affect you. It is an all or nothing proposition, I'm afraid and I know this is going to be hard for you under your present living conditions because that means tracking down all the hidden gluten in foods, not just the obvious wheat, bread, pasta, cookies thing. It also means checking your scrips, OTC meds, personal care products like shampoos, etc., for gluten.

Is it possible that you could take the fresh foods that your mother buys and prepare your own meals with them, and keep your own separate pan in which to prepare them, one that is not contaminated with gluten? That way you could be sure that nothing that has gluten in it was added to your food. And it is best to start out eating this way at first anyway, not eating the processed gluten substitute foods which have different grains that we often find hard to digest. Lunch at school will be difficult - you could get some brown rice wraps from Trader Joe's if you have one near you, or some Udi's bread for sandwiches, or take some leftovers from dinner. Breakfast could be eggs and fruit, snacks vegetable sticks, nuts, trail mix, fruit. I am sure you can think of lots of ideas depending on your likes and dislikes. Probably cheese is probably out for a while, although with my lactose intolerance I could still eat it because the enzymes predigest most of the lactose.

At any rate, I do think you should give it a try and not wait and do more damage to your body. This (celiac) is really one test that you do not want to pass

[Buffheart]

How will I know if they are getting higher? The last time I saw my GI doctor was in August 2010 and he said I don't have to see him for another 12 months. Although I do still have bloating/cramps, it is not as bad as in the summer. Can I still have Celiac without showing any damage, or is it just non Celiac sensitivities? How can I tell? How can I get those numbers too? The range I mean. I don't believe he gave me a copy of the results.

Why do I have to check personal care products for gluten? They are just going on my skin, so how does that affect anything? As for meds, I am on three. Can they contain gluten? I have horrible acne, as embarrassing as it is to say, and I know that gluten can cause skin rash, but it may be caused by medication. Unfortunately I cannot stop my medication, so I hope it is caused by gluten because that I can stop.

Preparing my own meals would mean learning how to cook Are there any gluten free cook books you know of? Do I have to cook a certain way? The only way to have my own certain pan would be for me to buy my own, but I have no where to keep it. I shall have to look. What about the toaster? From what I have read, and seen, it contains a lot of crumbs which might cause some kind of reaction. No, we do not have a Trader Joe's, but I hear there is one moving in downtown.

Here are the symptoms I have

*Bloating

*Cramping

*Upset stomach

*Acne (may or may not be related)

*Stomach physically sensitive, meaning I cannot lay on my stomach long, have anything heavy on my stomach, sometimes can't even have belts or anything tight on (may or may not be related)

*Mouth sores, often times many at once and then none for weeks/months (may or may not be related)

*Easy bruising (sometimes not even knowing how I was bruised)

*Nose bleeding (generally only in dry weather)

*Possible others that I can't think of.

[mushroom]

The only way to know is to test them; you cannot always tell by symptoms. In fact, there are people who have no symptoms at all. You can get copies of your lab reports from your doctor's office - you just have to ask. They will probably have you sign a Release of Records. This, incidentally, is something you should always do because often significant results get overlooked

Personal care products - shampoos and soaps can get in the mouth, lipstick/gloss can get eaten; it is generally better all around to avoid anything with gluten then you don't have to worry about touching your food. Do you always wash your hands before you touch food? And if your soap has gluten in it, are you sure you wash it all off? This may sound crazy strict to you but there are people that sensitive.

Yes, it is possible to react differently to different foods on different days. Sometimes it depends what they are eaten with. Sometimes it makes no sense, it just is. Pizza always used to be the food that made me feel good; I gave up pasta long before I knew gluten was a problem. Unfortunately gluten is used as a binder in a lot of medications, and since they don't come under the food labelling laws the only way of knowing is to have the pharmacist check them out for you or call the manufacturer yourself (your pharmacist will be able to tell you which company makes the brand he is dispensing if it is a generic. By the way, posters have reported that their acne cleared when they went gluten free - maybe you will be lucky too.

You could keep your own cooking pan in your room (under your bed if necessary) so that no one else could use it. You will also need separate peanut better, spreads, etc., anything that anyone else would dip a knife in that is covered with gluten crumbs. These jars should be clearly marked as yours only!! No, you don't have to cook any particular way. For a one-dish meal a stir-fry would be easy: you saute the small pieces of meat in a little oil, then add the vegetables (you can use frozen), and some gluten free stir-fry sauce (NB: most soy sauce has gluten except for Tamari and La Choy). Healthy, easy and quick. Or you can just saute a chicken breast in the pan and cook some veggies in the microwave. You can microwave baked potatoes and sweet potatoes too. Cooking does not have to be complicated. Ask your mom for help - if she sees your are serious about your health she might be more cooperative and helpful. Yes, toasters are a problem; do you have a toaster oven by chance? Or there are toaster bags for use in regular toasters that can be ordered from that company with the name of a south american river.

[Buffheart]

So the only way to get the records would be to go there? I don't have an appointment for months.

I do have my own little snack cabinet to keep my foods from being eaten but it is too small for cookware. What about baking dishes? I bought some baked good mixes to try, so would I need my own baking dishes too? As for condiments and such I have sunflower seed butter and apple butter. I did check the ingredients on the apple butter with my list of gluten foods and I think it is gluten free. I don't use Ketchup, mayo, or most other condiments.

Yes I do have a toaster over. Why?

Are you talking about the Orinoco River? I had to look that one up!

[mushroom]

No, you wouldn't need to go there if it is hard to get there. You could call them up and ask them if they would mail them to you. As I said, they may want you to sign a release which you could mail to them.

That's good that you have your own little snack cupboard. A box under the bed would do for other baking dishes and pans. You can get some fairly cheap foil dishes that can be used several times over. A toaster oven can be used for making toast - you would just need to wash the rack off before you used it. It is also useful for cooking small servings of things like roast vegetables and single servings of other foods. Check out this thread for ideas:

By the way, yes, your symptoms are common among celiacs, and those with gluten intolerance, and it really doesn't make much difference which it is, because you need to eat a gluten free diet either way.

[Buffheart]

What is the difference between Celiac and plain intolerance?

[mushroom]

What is the difference between Celiac and plain intolerance?

Ah, the million dollar question. Some, like me, will tell you that celiac is a form of gluten intolerance, the only form that we have so far devised tests for. There is a form of gluten intolerance that provokes mainly neurological symptoms, such as gluten ataxia (balance problems which mimic MS), migraines, tingling and numbness in the limbs, etc. These people usuallly test negative for celiac, as do those who have joint pain as their primary symptom. Many people with all the symptoms of classic celiac test (and continue to test) totally negative for celiac, although they can develop many of the complications that celiac patients develop. It is an area where little scientific study has been done because there is no money to be made from a condition which needs no medication or surgery

[eatmeat4good]

The reactions are or can be just as severe if you are intolerant or sensitive. The only real difference is Celiac is the one that shows up on testing. But that isn't always the case.

People who are sensitive or gluten intolerant have to be just as vigilant about cross contamination. Even though it may not show up on testing, gluten can make your life miserable.

[Buffheart]

So, for what it's worth, I may as well have Celiac?

[eatmeat4good]

Right! Exactly right!