Confused About Symptoms And Testing

[discouragedmomof5]

Hello All my name is Anne. I have had health problems for the past nine years. Over the last year I have had an increase in migraines, a more apparent intolerance to dairy and I truly believe Gluten. In the last two weeks I have been diagnosed with anemia and hypothyroidism. I had an incredible hard time getting my doctor to even buy into a possibility of celiac.

Anyway, tomorrow I am supposed to get the blood test done. I have so many questions. I have excluded gluten from my diet (basically) for the last month- will gluten show up in my test? This concept and the life change thereof is so overwhelming. Can anyone offer advice or wisdom?

My other increasing symptoms have been bloating, gas, major major mood swings, increased headaches and overall pain, constipation and diarhea and with the slowing of my thyroid weight gain and a life-stopping change in energy.

I am afraid to eat- Can anyone relate?

I don't know what is and is not good for me to eat. I am so tired of feeling so bad and I really, really love chocolate.

Thank anyone for your help.

[stef-the-kicking-cuty]

Hello there,

I can so relate, it isn't even funny anymore. The good thing with me was, all my migraines went away when I went glutenfree. The problems I had with my diagnosis actually were, that I already didn't eat gluten anymore for (I think) about a week before the doc did the blood test. And my blood levels were negative. Slightly elevated, but still negative. And I had a hard time convincing him, too. That's why he didn't even make a biopsy anymore, because I "only" had slightly elevated blood tests.

Some of my bigger problems also were bloating, mood swings, gas, nerve problems, constipation and diarrhea practically at the same time sometimes. Pain in the belly and the bone of my forehead and a thyroid problem with 17, which is gone now. At the end I also had asthma, severe heart/muscle/nerve problems and gastric reflux which is all pretty much gone now. Well, except of the nerve damage. It still pops up when I'm accidentaly glutened.

The most important thing for you to know now is this:

Don't under any circumstances go glutenfree BEFORE the tests. They could (and probably are) be falsified. If you have some other questions, please feel free to ask us. Somebody always answers... Good luck with your test though, even, if you already stopped eating gluten...

[stef-the-kicking-cuty]

Oh, and I forgot. If you like chocolate. I know Hershey's is glutenfree and Nestle.

[turtle99]

Hi Anne,

If you have been on a gluten free diet for such a period of time, then your test willnot be accurate. You need to be consuming gluten , in order for the blood test to show whether you are reacting to the gluten. I suggest you re-consider the procedure before you get tested for Celiac. Oh, yes , Stef , has already mentioned this. Did you consider going to a ND?

I'm in the process of confirming whether I am gluten intolerance also. I've had much of the symptoms you have. I found that I had the worse reaction to GMO wheat products---my moods were like having PMS ten-fold all the time.

I also became so scared of what to eat the past 5 years. I'm so careful , trying to eat everything natural, no preservatives, or chemicals. Trying to eat organic whole foods, stay away from packed/process foods, MSG, and conventional meat. Some think I am overly sensitive but I really notice a different between eating a conventional salad, (which gives me lots of gas), and an organic salad (which I do not feel any digestive compliants afterwards). It's been pretty crazy. And now that I might be Celiac, it's going to be even more of a food game. What is your diet like?

Big chocolate lover right here! Love the dark cocao flavour and the happy high ! I just bought 2 bars of organic chocolate today!

[discouragedmomof5]

Hi there again! What is an ND? What are GMO wheat products?

In response, I eat primarily organic foods- silly me didn't think that any of that could be harmful to me since it was organic.

Wow! so much to absorb. I have five children whose lives.along with my husbands have been severely altered by my health over the last nine years.

I need to learn more about foods that contain gluten. Does anyone know of a good site that can point me in the right direction?

[tarnalberry]

Since you have been gluten-free, the tests will not be accurate. If you want a blood test, you'll need to be on gluten for three months.

[turtle99]

Hi Anne,

Wow, you are a super-MOM! Five children must keep the energy high in your home It's so good that you eat mostly organic foods. I know how it feels when you need to figure out what's wrong but can't get to the root of it. There are alot of possiblilities, so it could be more than one reason you are experiencing those symptoms. Consider your whole life and what you've been through.

GMO refers to genetically modified, which is basically could be anything that isn't certified organic. So that's just my personal experience--- with organic wheat and non-organic wheat.

ND= Naturopathic Doctor

Naturopathic medicine can be very effective because they treat the whole person, not just looking at symptoms. It's a more gentle approach to healing and they do consider the stresses in your life, your emotional health, etc. When I wasn't satisified with one doctor , I went to another for another opinion and to seek a different approach.

[watkinson]

Hi Anne,

Like others have already said, you need to be ingesting gluten to have the test come out positive.

Celiacs is and autoimmune disease. Which basically means our immue systems are goofy. A healthy immune systems sends out antibodies to destroy harmful bacteria or viruses, poisons, ect. When we ingest gluten, our antibodies come out to destroy it as though it were the enemy. The real problem is that the antibodies can't tell the difference between the gluten and our healthy cells so they start to kill us off too. starting with the small intestines, causing leaky gut syndrome. This means food particles and so forth are leaving the small intestines and entering the bloodstream. Again the antibodies come out and attack anywhere these particels go, causing a miriad of other health problems.

You have to be ingesting gluten for the antibodies to come out. When the blood tests are done, they are looking for those antibodies to make a positive result, if they are not there then your results are negative.

What to eat and what site to look at to find out what is safe and what's not?

This one!

Spend some time looking around, this site is excellent. It can answer all your questions. Look at the related diseases lists, and the food lists. It will tell you books to read, cookbooks, and gluten-free stores to buy from. A great site!!

By the way I am the biggest chocolate addict. Most hershey's and Nestle's are gluten-free like Steph said, and many of the name brand ice creams are. There are some great gluten-free brownie and cake mixes, all kinds of stuff. Go to the safe and forbidden food lists and look up mainstream candies. Not everything is on there but it gives you a great start. I love to add Nestle choc chips to my ice cream with Hershey's syrup on top. Reese's, butterfinger, and Snickers are great, as long as you can have peanuts.

Have fun exploring,

Wendy

[discouragedmomof5]

Thank you all for your help. I cannot begin to tell you all how much of a relief it has been to read your stories and finally find someone that can relate to me. I think that feeling so isolated has been more overwhelming than feeling bad all of the time. I have known for quite some time that wheat and dairy bother me, the two combined kill me. Last night before I received any responses from any of you I ate a piece of pizza to get gluten back into my body. Well after swelling like a 6 month pregnat woman, vomiting, getting a migraine and being up all night I decided that I do not need a blood test to tell me what is right in front of my face. I have felt terrible all day long. Now I have to learn how to be gluten-free, my version over the last month or so is just not to eat since food was bothering me so much.

How long were any of you all without gluten before your health started to improve?

[Darby]

Thank you all for your help. I cannot begin to tell you all how much of a relief it has been to read your stories and finally find someone that can relate to me. I think that feeling so isolated has been more overwhelming than feeling bad all of the time. I have known for quite some time that wheat and dairy bother me, the two combined kill me. Last night before I received any responses from any of you I ate a piece of pizza to get gluten back into my body. Well after swelling like a 6 month pregnat woman, vomiting, getting a migraine and being up all night I decided that I do not need a blood test to tell me what is right in front of my face. I have felt terrible all day long. Now I have to learn how to be gluten-free, my version over the last month or so is just not to eat since food was bothering me so much.

How long were any of you all without gluten before your health started to improve?

I'm new to all this as well. You meantioned your pizza episode! About 2 weeks ago we had pizza and after eating two small slices, I started to bloat and got a bit nauseaus (not real bad) but I felt uncomfortable all night. And even into the next day. I think I also had a bout of diarrhea the next morning -- I don't remember. But I felt crappy!

I'm interested too in hearing how long it takes to feel better once gluten-free -- everyone is different. But how many did it take more than a year and how many right away.

My bloodtest was positive and Thurs. I go in for a biopsy. It's so hard to continue eating gluten right now knowing that I may be a true celiac and if I quit I could start feeling better!

But my Dr. told me to continue so we get accurate results.

Darby

[discouragedmomof5]

We have decided to not have the biopsy. After reintroducing gluten back this week I have felt horrible, I do not need another test to tell me what I already know, nor can my body handle gluten anymore. It is personally not worth it to me to continue to feel as bad as I have. If by chance my stomach problems etc. do not begin to improve in the next few months or so than I will get a biopsy.

Feeling good and having my life back is more important than any testing.

[ianm]

I do not have an official diagnosis and when I first went gluten-free I did not know that tests even existed. My health did such a drastic turnaround that it became very obvious what the problem was. It took 3 months to really start feeling better but I did see some changes right away. It was a good year before I really felt healthy. The only cure for this is to eat a gluten-free diet so I just can't see the point in getting myself tested. I spent 36 years being sick and there is no way that gluten will intetionally touch my lips. I am working on getting my life and career back on track so I just cannot afford to be out of action that long.

[turtle99]

Watkinson,

I love how you explain what happens in the body of celiac disease persons. I always find it hard to explain what it is to other people.

Does untreated celiac disease always lead to leaky gut syndrome?

How do we heal our intestinal tract, other than going gluten-free?

I'm in the middle of waiting for a diagnosis and getting very anxious to find the resutls. But I'm quite sure I have celiac disease since I have many symptoms.

[watkinson]

Hi turtle99,

Sorry, this is the first time I've been back on line since last week.

Great question! I'm not sure if untreated celiacs ALWAYS leads to leaky gut syndrome. I asume it does eventually but I don't know for sure. I read research all the time but I've never read anything that explains that difinitively.

The only way I know for sure to heal the intestines is to be strickly gluten-free. I do know that it can take some time though. I try to eat organic stuff whenever I can and to eat cleansing foods like grapes, and drink lots of green and white tea.

Good luck with your diagnosis, I hope your not a celiac, but maybe giving up gluten anyway will make you feel better.

Wendy

[Bette]

ianm,

I like your straightforward approach. When you first started your gluten-free diet, did you have other intolerances, or did you go gluten-free only. I get really bothered by fatty foods, and get a terrible pain in my right side, just curious.....

Bette