Waiting For Blood Test Results

[sandsurfgirl]

Hello, I'm new to the board.

I have had digestive problems my whole life and when I was around 19 I was told by an acupuncturist it might be wheat. I cut out wheat, cleared it all up, but was then told by an allergist that I "only" had an intolerance, not a true allergy so I could have some wheat and dairy in moderation. Well I'm 40 years old now and have been suffering for years with all sorts of troubles, which I'm now figuring is due to the "moderation" and not elimination of wheat and gluten in my diet.

Celiac disease was mentioned by my OB when I was pregnant with my first child 6 years ago, but the gastroenterologist said he didn't use blood tests and couldn't do a biopsy while I was pregnant or nursing. As soon as I weaned my son I got pregnant again and still no biopsy.

In between kids I had 2 severe attacks with vomiting, diarrhea, horrible stomache pain, dizziness where I thought I would pass out, sweating, etc. I had a constant pain in my right side near my ribs that lasted for months. They did all sorts of tests on me, but NOT celiac testing (grrrrr so frustrating), tested my gallbladder function and some nasty ones where I had to drink digusting things and get scans. ALL were normal, so I was told I had IBS and once again, not cut out gluten or dairy but limit them. The doctor poked around and said the area of pain was in my bowel, but gave me no answers except IBS medicine which I couldn't take while I was nursing anyway.

When I was pregnant with my 2nd child I was vomiting and nauseous the entire 9 months. Sheer misery, but of course they just blamed it on pregnancy. I also had horrible muscle and joint pain where I would have trouble walking at times.

Limiting wheat and dairy did help, but not completely. I also have hypothyroidism, which I have learned from reading is commonly linked to celiac disease.

So a few days ago, after a pizza party where I ate too much pizza, cake and ice cream, I ended up nearly passing out from dizziness. I had vomiting,nausea, chest pain and I just felt awful. I went to the ER and the doc checked my heart from a whole lot of tests and it was all normal. I shared with him my history and story and he said he really thinks I have celiac disease. He is a celiac sufferer and so was the nurse. What are the odds of that?

My doctor ordered a celiac blood panel and I'm waiting on results. She told me to stay on a regular diet including gluten until I see a gastroenterologist but with insurance approval and the time it takes to get an appointment, plus the appointment for a biopsy that can be a month or two.

Meanwhile I ate some bread and crackers yesterday and had an attack today when I was alone with my 2 and 5 year old children. I had to tell my 5 year old that mommy might pass out and he would have to call 911 for help if I did. Horrible, horrible horrible.

After that trip to the ER I have been reading about celiac on these websites for days and all of it fits me 100%. I think I've had this my entire life and my whole life makes sense in light of this. My wheat intolerance is more than that, I know it.

So if I get a positive blood test back tomorrow all questions are answered, but if I don't, I really can't wait to start a gluten free diet. I'm too sick and I have children to care for. But if my blood test ends up being negative, then what? If I'm on gluten-free diet, then a biopsy might not show anything right?

My doc said you've lived with this all these years, just give it a couple more months to get a solid diagnosis, but in these couple of months I might end up in the hospital and then who will care for my kids?

At this point I'm so disillusioned with doctors I don't even want to do a biopsy. I just want to start the diet and get on with my life. When I've gone wheat free in the past it made me so much healthier but I never stuck to it because I was told I didn't need to.

Any advice would be greatly appreciated.

[mushroom]

Hello sandsurfgirl, and welcome to the forum.

Yes, as you have found out from reading here, your story is a familiar one (unfortunately ) I am glad you are on your way to getting some answers.

You seem to be someone who needs to be definitely told that you have celiac disease, i.e., that a diagnosis is important to you. That diagnosis can really be made from the blood test results, if they are positive. If they are negative, then you might want to go ahead and have the biopsy to get the diagnosis, which will require you to eat gluten until it is done. It is really up to you to decide. Bear in mind that many people with symptoms such as yours can test negative on both blood and biopsy, so-called false negatives, or as the medical profession is coming around to thinking, gluten sensitive instead of celiac. This can be very frustrating for the sufferer because many doctors will tell them, as you have been told in the past, that you can continue eating gluten if you are not celiac.

But whichever is the case, celiac or gluten sensitive, the only cure is to avoid all gluten, even minute traces of it, no matter what the doctor says. From your history, you definitely sound gluten sensitive at the very least, so if your only interest is in feeling better, you can start the diet right away. You are lucky to have found that ER doctor and nurse to put you on the right path. Let us know what you decide and post your test results with the lab reference ranges (make sure you get a copy of the results from your doc.)

Good luck with your decision-making.

[sandsurfgirl]

Hello sandsurfgirl, and welcome to the forum.

Yes, as you have found out from reading here, your story is a familiar one (unfortunately ) I am glad you are on your way to getting some answers.

You seem to be someone who needs to be definitely told that you have celiac disease, i.e., that a diagnosis is important to you. That diagnosis can really be made from the blood test results, if they are positive. If they are negative, then you might want to go ahead and have the biopsy to get the diagnosis, which will require you to eat gluten until it is done. It is really up to you to decide. Bear in mind that many people with symptoms such as yours can test negative on both blood and biopsy, so-called false negatives, or as the medical profession is coming around to thinking, gluten sensitive instead of celiac. This can be very frustrating for the sufferer because many doctors will tell them, as you have been told in the past, that you can continue eating gluten if you are not celiac.

But whichever is the case, celiac or gluten sensitive, the only cure is to avoid all gluten, even minute traces of it, no matter what the doctor says. From your history, you definitely sound gluten sensitive at the very least, so if your only interest is in feeling better, you can start the diet right away. You are lucky to have found that ER doctor and nurse to put you on the right path. Let us know what you decide and post your test results with the lab reference ranges (make sure you get a copy of the results from your doc.)

Good luck with your decision-making.

Thanks! My concern is exactly what you are saying. Waiting around for test results which could be false negatives, or a gluten "intolerance" and meanwhile I'm sick a dog and can't take care of my kids.

I'm going to do the diet now. I unofficially started today because no way was I going to eat anything else to make myself more sick. I might even have blood test results tomorrow. I don't care if it's negative. I know that wheat and gluten are making me sick. What a long frustrating journey this is. So many missed opportunities for doctors to help me. I have been on an emotional roller coaster the past few days, doing all this reading and realizing that I've been suffering so long from FOOD and I'm not going to wait for another doctor who may or may now know what he is talking about.

Honestly, I don't even want to do a biopsy. It's invasive and you have to go under anesthesia right? I hate being under anesthesia and I get really sick from it. I can't see any reason to torture myself.

[mushroom]

No, the biopsy is not done under anesthesia. They give you a sedative which contains something that basically makes you forget the whole procedure. It is invasive, but most people do not experience a lot of discomfort following it.

But good for you for deciding to make yourself better. Let us know how it goes and what obstacles you encounter. You probably should cut out dairy at first because if you have intestinal damage you will have interfered with the body's ability to digest lactose. You can challenge in a week or two with yogurt and/or hard cheese and see how you react. If you react to those, too, you may be casein intolerant and would have to stay off dairy. I hope not

It is frustrating, isn't it, when you consider how many opportunities we give doctors to diagnose us, and they keep coming up with the same old, tired tunes, and no answers. Boo!!! to that OB who did not use the blood test. I often used to tell my husband "I feel toxic", and he didn't understand what I meant, and I didn't know what it signified either. But I now know I was poisoning myself

Keep in touch and let us know how your are doing. There are threads on this forum for practically every question you might think of, at the touch of the google button, but if you come up with some you can't find answers to, well, that's what we're here for

[sandsurfgirl]

No, the biopsy is not done under anesthesia. They give you a sedative which contains something that basically makes you forget the whole procedure. It is invasive, but most people do not experience a lot of discomfort following it.

But good for you for deciding to make yourself better. Let us know how it goes and what obstacles you encounter. You probably should cut out dairy at first because if you have intestinal damage you will have interfered with the body's ability to digest lactose. You can challenge in a week or two with yogurt and/or hard cheese and see how you react. If you react to those, too, you may be casein intolerant and would have to stay off dairy. I hope not

It is frustrating, isn't it, when you consider how many opportunities we give doctors to diagnose us, and they keep coming up with the same old, tired tunes, and no answers. Boo!!! to that OB who did not use the blood test. I often used to tell my husband "I feel toxic", and he didn't understand what I meant, and I didn't know what it signified either. But I now know I was poisoning myself

Keep in touch and let us know how your are doing. There are threads on this forum for practically every question you might think of, at the touch of the google button, but if you come up with some you can't find answers to, well, that's what we're here for

I totally know what you mean about feeling toxic. I feel the same way. I gave up dairy a long time ago, and that was one of my many diagnoses- severe lactose intolerance. But that hasn't cured me.

I'm sure other people have gone through the emotional rollercoaster too, where it's "Yay I can make myself feel better!" and then "Graham crackers, pizza, pasta, italian restaurants. Oh no!" I feel like I have to mourn the loss of some foods. I'm Italian so having to eat unusual pasta and not go out for pizza once in awhile will be hard. Even my 5 year old said to me "Oh no mommy. YOu can't have pizza!!" LOL

[mushroom]

I know what you mean about mourning the loss of things we love. It is common. It is also common to go through a gluten withdrawal, similar to quitting smoking and withdrawing from nicotine (we keep being addicted to these things that hurt us most ), so don't be alarmed if you feel a little punk for a while. BUT, you have not given them up for good. Pretty soon, once you have done some healing, you will be scouring these boards for recipes for pizza crust, crusty bread, what kind of pasta to buy (most everyone says Tinkyada is the best). So tell your son it won't be long before mommy is cooking pizza.

But best to avoid restaurants for a while, even those with gluten free menus, until you are more confident of your ability to avoid gluten. Restaurants are notorious for cross-contamination (while the regular staff might be educated, they have a fill-in staffer on for the night who doesn't even know what "gluten" is ), so you have to be very specific with restaurants. That will come later; for now I would avoid them, especially fast food.

About the only foods difficult to duplicate gluten free are phyllo pastry (some members have tried it), good croissants, and crusty sourdough french bread. Pretty much everything else can be duplicated. I have had a couple of years practice getting to know all the flours (and have to avoid soy and potato starch) and can still make things that people do not believe are gluten free because they are used to that cardboardy stuff that used to be all you could buy at the store. Kinnikinnick breads are good and everybody is recently raving about Udi's bread, though I haven't tried it (live in New Zealand most of the year). Pamela's baking mix is very popular for cookies, cakes, waffles, pancakes, etc. There are a lot of good package mixes for bread and cakes made by other companies. Bob's Red Mill flour blend is very popular if you want to do "from scratch" baking. Don't forget that you have to use xanthan gum with the gluten free flours to make up for the lack of gluten--one teaspoon per cup of flour. Check out some cookbooks from your library and start getting an idea of what you like. The gluten free flours behave totally different in baking so you will have to get used to them and their flavors, but there are so many of them, some members use exclusively ground almond flour

Happy gluten free living. (Oh, by the way, if the rest of your family is going to continue to eat gluten, you will need to be very aware of cross-contamination. Keep a separate gluten-free counter space (strictly enforced), gluten free areas of the fridge and pantry, you will need your own toaster if you toast things, your own spread, jam, peanut butter, anything that a gluten coated knife could be dipped into) and you will need new (for you only) teflon pan, wooden/plastic utensils, colander. Remember to check all personal care items for gluten, especially lipstick and toothpaste, tell your pharmacist to screen your prescriptions for gluten, make sure all supplements are free of gluten (check online or call the company if you are not sure, and read EVERY label!.) Sounds daunting at first, but you do get used to it.

[sandsurfgirl]

Thank you so much for all of that information! I'm going to print it out and save it. I'm totally overwhelmed right now.

[mushroom]

Thank you so much for all of that information! I'm going to print it out and save it. I'm totally overwhelmed right now.

Don't be overwhelmed. These things don't all have to happen today Just take them one at a time and pretty soon you'll be there. The last thing you need is to stress about these things. Just say, I can do this, and tackle the task systematically. Your hardest task is going to be teaching your family to respect your gluten free status. Your husband will probably be on board, considering how you have suffered, but young children do not have the understanding. Some households go totally gluten free to make life easier for everyone, but there can be a lot of opposition from those who do not need to. My husband elected to go gluten free with me, and after he started cheating on the diet discovered he was celiac when he broke out in dermatitis herpetiformis There is no problem with cheats now. Often families resolve the problem by eating gluten free at home and they can eat whatever they want away from home. This is for you to negotiate with your family.

One thing you should consider is that this is a genetically carried predisposition and your children could very well have inherited a gene that predisposes them to gluten intolerance also. You should watch your children for signs of gluten intolerance too. Even if they have the gene they may not develop it, but there is a good statistical chance that at least one child could become gluten intolerant (I don't know how many children you have )

Just some extra thoughts (in case you didn't have enough to think about )

[HyperGirl]

Welcome to the forums! I'm new too!

I had blood tests today, one of which was for celiac. I know the feeling of waiting for results...especially the thought of "What if the results show nothing?"

It's nearly a year since my issues started. I suddenly got a rapid heart rate last January, it kept speeding up as though I'd been exercising - but it happened for no reason. GP said to cut out/cut down caffeine but I knew it wasn't that. I started a new job so never got round to going back.

As the year went on (and I left my new job and spent the rest of the year on benefits) I lost weight with no explanation, had anxiety, then around September I developed trouble sleeping, recurrent and painful mouth ulcers, kept getting a swollen gland in my neck...and the past month or 2 was when it all "kicked off". Feeling sic/full quickly or feeling empty and sick after eating, gas, bloating stomach, pains, tiredness, headaches...And I realised it seemed to be gluten that was triggering it!

Ok I didn't have the best year but I knew it wasn't all down to stress, as my family kept telling me. It wasn't like me, I've had far worse/stressful times but not suffered like this.

In September I had a lot of blood tests, thyroid, blood count...all those sorts of things. All fine, except slightly low potassium. Which I now know could have been caused by celiac (if I have it).

I know you have to carry on eating gluten before the test, which I did. But how long can you go without before it doesn't show up?

Because this morning, I had gluten 20 mins before the test. The last time I had gluten before then was about 12 hours before (late last night). And everyday I've had gluten as well.

Is 20 minutes too soon and is 12 hours too long? I didn't mean to eat so late this morning but I got up too late and I'm annoyed with myself! So I've been wondering about it all day.

[sandsurfgirl]

Well it's positive.

I need to pick up my labs later but over the phone my doc gave me the results for my IgA. It's 28, and normal high is supposed to be 17.

She's sending me to a gastroenterologist but I already started the gluten free diet a couple of days ago.

All the other tests were in the normal range but that doesn't matter right? Any positive is positive from what I've been reading on here correct? My doc doesn't fully understand how to read the results but I told her I had been reading and she went with what I said. She's a new doc for me and just awesome!

Now I have to process my sadness and anger at being misdiagnosed all these years. My OB said years ago that I had it and she was right but the stupid gastroenterologist refused to run a blood test. Ugh. I've been crying all morning.

[mushroom]

Now I have to process my sadness and anger at being misdiagnosed all these years. My OB said years ago that I had it and she was right but the stupid gastroenterologist refused to run a blood test. Ugh. I've been crying all morning.

Oh, I *am* sorry, But really, you did kinda know it deep down. Yes, tears of loss, tears of frustration, tears of anger. Get them all out now, and then take the positive steps you know you have to. Go see the gastroenterologist anyway. He may have nothing to offer or he could be helpful.

Good luck on your gluten free journey.