Nemi555

  danikali said:

-Comprehensive metabolic panel

-CBS w/Diff

-ESR, Westergren

-PT

-PTT(aPTT)

-Celiac Ab panel

-Danielle

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I don't know what all the tests are but I just wanted to wish you luck and I hope that they come up with some good answers for you. Give yourself a pat on the back for standing up to that doc who droned on about IBS!

Cathy

Hmmm, you all have certainly given me a lot to think about! I guess bottom line is that irregardless of the outcome of my biopsy, etc I am going to go back on the gluten free diet and stick to it for a good six months to see how I feel. That would be a good litmus test for me to really see how my body responds to it.

The last few days I've been eating gluten in preparation for my biobsy and I have to admit I feel like garbage. My allergies seem worse too. Of course it doesn't help that it's fall and the weather keeps waffling. But I was just starting to feel decent, clear headed and without abdominal pain and that says something. My system hasn't returned to normal yet...more constipation than the opposite and that gets uncomfortable. Rice is binding to say the least! I've been trying to eat more veggies to counteract the rice but maybe there is a vitamin that I'm missing?

And I do agree, one does not have to go hog wild on all the specialty items out there...fresh food is better anyway and since I have mold and additive issues I have to watch out for that stuff. My mom bought me a couple of cook books and I will begin to learn to bake stuff - breads and the like. I'm hoping to be able to eat egg whites so that I can do some other types of baking as I was more attached to eating cookies than other types of junk food. (and even then in moderation!)

My son is old enough now (17) to think things through (we have a good relationship and can talk) and I know that he too will decide to stick to the gluten free diet because he's been feeling better, has noticed how irritable and uncomfortable he gets when he eats even a small amount of gluten (like 2 slices of french toast)...I think he was just hoping that it would all go away and he could go back to eating everything. And believe it or not, he ate decent food - not a lot of junk!

It seems like there is an emotional process one has to go through (or at least we do) but logic and common sense do win in the end, one just has to go through the mental exercise to get there. Thanks for helping me with it.

When I first went on the Atkins diet a few years ago and then when I cut out gluten from my diet a month or so ago, I experienced withdrawal from the gluten! I found I was starving, not just hungry near meal times and even after I ate I felt hungry! For me it took about 2 weeks and those feelings/symptoms ceased. Now I'm normally hungry and a decent meal fills me up.

Hang in there!

  nini said:

condemn you to the diet?????

this is not a sentence! this diet is a life saver...

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Yes, it can be a life saver but it is a restricted diet and many people would feel it to be harsh. Of course if they were suffering they would gladly follow the diet. But let's face it, it's not mainstream (yet) and it's more expensive, requires more thought and preparation than eating all the food out there that the majority of the world eats! So, if you didn't need to eat that way, why would you? I think the doc just wants to make sure that it's necessary. I don't fault him here. YET.

  nini said:

well first of all if those are the only two tests they did, then you DID NOT have the complete Celiac panel and therefore cannot be an accurate indicator. Secondly, if you were cutting back your gluten intake prior to the testing it very well may have skewed the results. Third, if you feel better without gluten in your diet, does it really matter if it's Celiac, Gluten Intolerance, or a wheat allergy? The end result and the ONLY treatment is a gluten free diet. So. Why waste more time making yourself miserable for testing, when you can simply go gluten free and start to feel better? Especially if you aren't consuming enough gluten for damage to show YET? The tests can ONLY rule Celiac in, they cannot rule it out ever. You may have the tendencies for it and just don't show enough damage yet. Fourth, one of your numbers WAS elevated and definitely an indicator that there is a problem with gluten.

I really am serious that gluten is not healthy for anyone and some of us are just "the canaries in the coalmine" indicator that we are poisoning ourselves with food.

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I will have to find out more about this "full celiac panel" of tests and see what the doc says about that. Most of our symptoms are not typcial - neither of us has lost any weight - I tend to get alternating constipation with diarrhea, nausea, pain just below my sternum and on the lower left side of my abdomen, abdominal cramping that wakes me up at night, headache, irritability, loss of energy, stuff like that. So for me to know if it's celiac or some type of food allergy is important because while eating gluten free may help - is it the absence of gluten or is it some other component that I'm unconsciously including/excluding with it? Most of these symptoms only occurred when I ate pasta and lately they've picked up when I eat sandwiches, batter coated stuff, pizza, etc. so is that the celiac getting worse or is it some other additive that I'm having issue with? (like my allergy to eggs)

My son too only seemed to react with pasta - he ate a great deal of it. He never lost weight either and I think I mentioned his symptoms in another post... We both try and think back to see if there are clear symptoms and it could be that we felt lousy all the time so it becomes difficult to tell if it's only one thing causing the discomfort.

Now when my ex gets tested and if he comes back positive then for my son the odds are that he has it, regardless of any blood test results.

I know it seems we are hung up on getting confirmation of the dx but it seems important on some level. It does not mean that we won't continue to eat gluten free. It's just that I want to understand what is going on and I guess I want the docs to know too. I haven't had a lot of faith in the medical community in the past and from what I read here, many folks are not getting the support they need and deserve either. That is a travesty in my book (and pretty frightening!). I just don't want my son to have a lifetime of it and if I can help that not happen, then good! I'm also NOT going to accept a diagnosis of IBS. To me that is total hooey and I will NOT take any medications, fiber mixes, etc. They don't work! I want to know what is going on and I need to insist that my doctor work with me to figure it out.

Again, thanks for your input, it is helping me to think things out and understand what's going on. It can be so very confusing!

Cathy

  nini said:

well first of all if those are the only two tests they did, then you DID NOT have the complete Celiac panel and therefore cannot be an accurate indicator. Secondly, if you were cutting back your gluten intake prior to the testing it very well may have skewed the results. Third, if you feel better without gluten in your diet, does it really matter if it's Celiac, Gluten Intolerance, or a wheat allergy? The end result and the ONLY treatment is a gluten free diet. So. Why waste more time making yourself miserable for testing, when you can simply go gluten free and start to feel better? Especially if you aren't consuming enough gluten for damage to show YET? The tests can ONLY rule Celiac in, they cannot rule it out ever. You may have the tendencies for it and just don't show enough damage yet. Fourth, one of your numbers WAS elevated and definitely an indicator that there is a problem with gluten.

I really am serious that gluten is not healthy for anyone and some of us are just "the canaries in the coalmine" indicator that we are poisoning ourselves with food.

<{POST_SNAPBACK}>

I will have to find out more about this "full celiac panel" of tests and see what the doc says about that. Most of our symptoms are not typcial - neither of us has lost any weight - I tend to get alternating constipation with diarrhea, nausea, pain just below my sternum and on the lower left side of my abdomen, abdominal cramping that wakes me up at night, headache, irritability, loss of energy, stuff like that. So for me to know if it's celiac or some type of food allergy is important because while eating gluten free may help - is it the absence of gluten or is it some other component that I'm unconsciously including/excluding with it? Most of these symptoms only occurred when I ate pasta and lately they've picked up when I eat sandwiches, batter coated stuff, pizza, etc. so is that the celiac getting worse or is it some other additive that I'm having issue with? (like my allergy to eggs)

My son too only seemed to react with pasta - he ate a great deal of it. He never lost weight either and I think I mentioned his symptoms in another post... We both try and think back to see if there are clear symptoms and it could be that we felt lousy all the time so it becomes difficult to tell if it's only one thing causing the discomfort.

Now when my ex gets tested and if he comes back positive then for my son the odds are that he has it, regardless of any blood test results.

I know it seems we are hung up on getting confirmation of the dx but it seems important on some level. It does not mean that we won't continue to eat gluten free. It's just that I want to understand what is going on and I guess I want the docs to know too. I haven't had a lot of faith in the medical community in the past and from what I read here, many folks are not getting the support they need and deserve either. That is a travesty in my book (and pretty frightening!). I just don't want my son to have a lifetime of it and if I can help that not happen, then good! I'm also NOT going to accept a diagnosis of IBS. To me that is total hooey and I will NOT take any medications, fiber mixes, etc. They don't work! I want to know what is going on and I need to insist that my doctor work with me to figure it out.

Again, thanks for your input, it is helping me to think things out and understand what's going on. It can be so very confusing!

Cathy

  tarnalberry said:

In order to not get false negatives, you need to be eating plenty of gluten, daily, for about three months before testing. I know it sucks, but the tests won't pick it up right away; there has to be enough intestinal damage for a biopsy to see it or for the antibodies to make it into the bloodstream.

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[/quote

I guess I'm confused when it comes to my son...he had symptoms that I would have thought were more inidicative of celiac than mine were...he had the abdominal discomfort and distension, cankersores, irritability, fatty stools, stuff like that. He never had diarrhea or lost any amount of weight from it. Although he would go to the bathroom three times a day. And he's been off gluten for no more than a month - probably only weeks before the blood test. Why would his blood tests come back negative? And if he was off gluten for only a month or so then if he started eating it again a couple weeks prior to the biopsy, then it is possible that the test could still read positive if he has the disease? (if you're telling me that he has to be eating it for three months...and if he's only been off of it for 1, then returns to eating it, will there be enough in his system?)

I spoke to him tonight about it and told him he could forgo the biopsy if he chose and maintain the diet if it makes him feel better and he said that he wants to know for sure. Kind of like my doctor said - rather than condemn you to the diet he wanted to send me for the biopsy to confirm it. I guess I can understand that but I'm also going to use my head. If I FEEL better not eating it regardless of the test results, then I'm going to avoid gluten. It's odd too because I've been eating gluten foods these past few days and I have had reactions to the food...it's been a validation process for me. I know it sounds stupid but I guess I have to be sure in my mind that this is the way things are for me and it's not something else like allergy to some food. (I'm allergic to eggs and molds)

There is so much to know and understand.

Thanks for all your input!

Cathy

  kevsmom said:

The Clan Thompson Smart List of Celiac Drugs says that Allegra is gluten free.  I take it on a regular basis with no problems.

I hope this helps.

Cindy

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That is good to know Cindy because my allergist says that there is starch in it and she has a call into the drug rep to find out what specifically they mean by "starch". I'll let you know if they say anything differently. Of course it could matter which form you are taking. I take the 180mg tablets.

Cathy

Hi,

I was curious about something my doctor said when I was there last week - something about my IGA being within normal range and I recall telling him that I had been trying to avoid gluten for several weeks before the test. We didn't realize it was the wrong thing to do.

Anyway, I called my allergy doctor and asked her to fax me my results and this is what they said:

IGA Gliadin antibody 5 (normal 0 to 19)

IGG Gliadin antibody 24 (normal 0 to 19)

Would a couple of weeks be long enough to affect the IGA results? My doctor said he was curious about the first and is sending me for the biopsy but also for an intestinal xray. They have under secondary diagnosis: IBS IBD/sprue. I read something about Selective IGA deficiency and it is supposed to be "the most common of the primary immunodeficiency diseases." It further states that allergies "may also be more common among idividuals with Selective IgA Deficiency than among the general population." One more thing they say is "Another type of allergy associated with IgA deficiency is food allergy, in which patients have reactions to certain foods. Symptoms associated with food allergies are diarrhea or abdominal cramping." And those are definitely symptoms that I have!

I don't know! It's all so frustrating not knowing what is going on. But I know my son wants to maintain a gluten free diet because he feels 100% better and more than likely I will too. I've been eating a few things here and there to build up my system for the upcoming tests and I certainly haven't felt well. I'm not sure I want a return of all the symptoms!

Cathy

  francelajoie said:

Hi Cathy,

Where are you getting your tests done? I think I might need further testing.

The gluten free diet seems to be working but certain things like coffee make me ill and coffee is suppose to be safe.

France

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Hi France,

What kind of coffee? Plain coffee? There may be something else in there that is bothering you and it's not gluten. Do you add any creamer or anything? Those can have gluten. I have other food allergies so have to watch out for those too. Anyone else have issues with coffee? I can't drink it on an empty stomach but I don't suppose that is the same thing.

I am having my tests done here in Springfield, through Baystate Medical Center and they sent my results to a lab in Cambridge.

What kind of tests are you looking to have done?

Cathy

Nilsa,

I agree with you and appreciate your honesty! We have every intention of returning to the diet but I do think it is important for there to be an "official" diagnosis. I myself am not keen on doctors and have only had a couple of them during my lifetime that I trust and feel that truly listen. But this is for my son and I don't want him to have a lifetime of problems! So we will play the game for a little while and then do what we think is right. So far our symptoms are not severe and by mid-December we will be back on our gluten free diet and feeling just fine!

Cathy

  nini said:

Why on earth can't the Dr.s accept a positive dietary response as a diagnostic tool????? Oh, let's just make them sick so that we can charge the insurance companies more money for the tests...

Hi Rachel,

Thanks for your reply! My son isn't being tested on the 23rd, he's only going to see the Dr. for the first time. His blood test already came out negative but he had been eating gluten-free for several weeks. What we hope to accomplish by his eating gluten prior to the appointment is so the doc can see him unwell and also Joey will be able to explain to him what symptoms he's having. We want the dr. to send him for the biopsy to confirm. He might not do that based on a negative blood test and him feeling just fine. You know how dr's can be - if you aren't experiencing serious symptoms now, they don't believe you were ever sick.

Cathy

  Rachel--24 said:

Hi,

Just so you know eating gluten just for a few days before the test most likely wont give a positive result even if your son has Celiac. Be prepared that he could have a false negative due to already starting the diet.

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Hi!

I'm excited to see there are folks from Massachusetts here! I'm from Western MA too - Springfield area and have just begun the testing for celiac disease. My son too. We'be been gluten free for almost a month and have felt great but now have to go back to eating gluten in order for the doc to see how sick we are and for the tests to register properly. ugh.

I'm glad to have found this site as I know of only one person so far who has celiac disease and it sure would be nice to get to know more folks with this and learn how to live with celiac disease!

Cathy

Hi,

I'm new on the board and very new to celiac disease! I came this way via allergies...seems that since my son was conceived and born 17 years ago (when I was 30), I developed all sorts of allergies including food allergies but I wasn't tested for them until I was 40. Not all of them showed up at the time of testing either - it seems they've been gradually showing themselves over the years. Or maybe we've just been untangling everything slowly and figuring them out!

I had a serious bout of something in the early 90's (I was experiencing chronic diarrhea alternating with constipation, nausea, couldn't lose weight, irritability, wildly irratic periods, etc) and went to Lahey Clinic where they tested me for all sorts of things (except celiac disease) and they told me I had IBS and to sit on the potty. I was furious because they were treating me like a hysterical female! I was so miserable and I knew my system was so messed up but no one was taking me very seriously. I finally went on the pill to regulate my periods and that seemed to calm everything down - at least to a manageable level for a while. Until I turned 40 anyway and then the allergies hit me full force. I was very sick and as I said above, that's when I went to an allergist and was tested for them- I'm allergic to cats, dust, mold (which transfers over to foods), grass, oak and birch trees, and 4 weeds. I now find I have an allergy to eggs and apples - my allergist tells me there are what they call concomitant and synergistic foods and eggs and apples are related to my oak allergy.

Now my son when he was small used to eat lots and lots of pasta (tortellini to be exact - he loved them!) and he would break out with vicious cankersores and complained his stomach hurt him all the time. He also had frequent ear infections. I mentioned to his ear, nose and throat doctor that I thought he had allergies but his response was "we don't like to test young kids for allergies" and went ahead and put tubes in his ears. (we didn't know what else to do so went along with the doctor)

Well, about a month and a half ago I was at my allergist's getting my shots and I mentioned those symptoms to her and she suggested he get tested for wheat allergies and celiac disease. I had never heard of it before like most people. I've been having trouble (again) since last March and I thought that I would get tested just to rule things out. Seems like I was reacting to foods but couldn't put my finger on what was causing my distress. I did discover that I'm allergic to sorbitol though. Anyway, I looked up celiac disease on the net and discovered that the only treatment for celiac disease was to eat gluten free. My son and I were game to try it and we did. Unfortunately it was before we were tested for celiac disease. My tests came back (and here I wish I had a copy of the report because I am unclear as to the correct terms) negative for the wheat sensitivity but positive for the celiac disease (it was a 24). My son's test was a week later and we had continued on the gluten free diet and of course his tests came back negative. His doctor decided to send him to the gastro doc anyway because of my results. I was actually shocked that mine came back positive as I didn't think I had any of the classic symptoms, not like my son did.

BTW we both started feeling so much better on the gluten free diet. But now we have to go back to eating it because if we're not sick the doctor won't be able to confirm the diagnosis. UGH! I'm still not sure I have it but there is something going on. I do think my son does though.

Interesting to note that my son's father may have celiac disease - he was very sick as a kid and was brought to Mass General in the early 70's and was tested for all sorts of things. They couldn't find anything but on a weird hunch the doctor wanted him to write down everything he ate...which he did faithfully and when the doc looked at the list he was shocked! He was eating at 12 years old enough for 7 adults and he was as thin as a stick! The kicker was that the doc still didn't get it because he said that all he had to do was stop eating so much! They felt that he was just pushing the food through his system because of the volume of food he was consuming! Unbelievable! He has been ultra thin most of his life - although he did gain weight after we were married and things seemed to calm down for him. He still ate a lot though. He told me the other day when we were talking about all of this that he never feels well. So I told him he ought to get tested for celiac disease. His mom is lactose intolerant, has Shogren's disease (spelled wrong), fibromyalgia and has stopped eating wheat!

Anyway, my son's initial appt with the gastro doc is on the 23rd and he said he will eat wheat (grudgingly) a few days prior to that so the doc will get a view of what's going on. Me, I'm starting to eat it again slowly as my biopsy isn't until Dec 19th and the xray of my lower intestines is on the 15th of Dec. Neither of us is looking forward to feeling unwell again and will return to the gluten free diet as soon as we can. I really want to get to the bottom of this for myself but especially for my child. I don't want him to have a lifetime of problems with no anwers.

Thanks for listening!

Cathy

Hi,

I find it easier just to make my own taco seasoning mix. It's simple and you know what's in it!

This makes the equivilent of 1 1/4 oz package taco seasoning mix:

1 Tablespoon minced dried onions (can omit if you use fresh onions)

2 teaspoons chili powder

1 1/2 teaspoons salt

1 teaspoon garlic powder

1 tsp cornstarch (to thicken - I usuall omit this entirely)

1 teaspoon cumin

1/2 teaspoon cayenne pepper (or more if you like it HOT)

stir to blend. Use the same amount of water you would use with the packaged stuff. My son loves tacos and even he'll mix up a batch when he's in the mood for them!

Cathy