Positive Blood Tests, Not Wanting To Go Through Endoscopie

[dark-angel-warriore]

Hello,

I have been reading numerous posts prior to posting, and I know I am not the only one to go through this but I guess I am looking for people who actually have done it.

I live in Ontario and I am a 23 years old female (even though that does not change anything it sets in with the rest of the story).

Here is my story : After puberty, I started having fainting spells constantly... We did numerous tests, and all of them came back negative, expect for an iron deficiency which was unexplained. At that time I was 14-15 years old.

The years went on, other issues came up, at 17 I was diagnosed with unexplained infertility, my iron level was still very low. I had very long cycles (3 to 7 months), which often had to be triggered with medication.

After a 4 months treatment on Clomid, I became pregnant at the age of 19. Knowing that my chances to have a child were very low I decided to keep my son (nothing to do with the story either but I just wanted to point it out for the rest of the story as well).

I had a fairly easy pregnancy. But after having my son, I had an unexplained hemorrhage.

Anyways, after having my son things started going down, I was going through a really rough time, started losing a lot of weight (I was only 125lbs before I had my son, 115lbs a month after I had him).

Anyways after I had my son, I started noticing that I was dizzy very often, my vision was getting worse, I was always constipated (unless I drank beer).

I started consulting different doctors (mainly walk in clinics because I did not have a family doctor for myself).

One doctor told me that my dizziness was due to the fact that I stood up too fast probably (??????)

Another doctor told me that it was probably just the way I held my head (????????)

I kind of gave up at that point.

After consulting another doctor for getting the flu back to back without a couple of months. The doctor finally decided to do some blood work, Celiac wasn't tested then, but my vitamin levels were.

It came up that my iron was extremely low. I was put on 3 pills of iron a day for 3 months.

3 months later I finally had a family doctor. I got tested and my iron level was still low, but since the iron pills were making me sick (so I thought) I was told that my body could probably regulate itself since it was almost at normal levels.

About 6 months later, I went back to the doctor's for unrelated problems (so I thought), my doctor told me that my issues were more than likely due to stress.

We tested for my iron again and it was very low again, I was put on another 3 months treatment.

I never ended up going back to get tested because I was tired of doctor's excuses.

Then my boyfriend noticed that I was losing my hair, I had a bald spot the size of a tennis ball... I was FREAKING out.

I assumed it was due to a lack of vitamins, so I started taking vitamin supplements on top of the iron pills that I had been taking for about 5 months now.

By that time, the dizziness has gotten worse; I would faint after moving the bed, or taking 2 shovels full of snow, or even going up the stairs.

My hair had gown an inch in 3 years, and I kept having unexplained bladder issues.

My mind was always foggy, my vision had gotten worse, I had changed prescription twice within a year.

My stomach was always feeling upside down, but I blame that on the iron pills or my cycles.

I would go to the bathroom only twice a week, something even less (but I was used to that so i thought that was normal). The least I would go was every 2 days.

I went to the doctor's after 2 months of being of vitamin supplement and my hair not growing back.

She said it was Alopecia and that it was probably due to stress (AGAIN).

But she said that it was time to test her iron levels... as she was saying that, it is like lighting struck her, and she told me that perhaps I should take the blood test for Celiac decease.

The only downfall was that the test was $60. I get to the lab, and the test was in fact $125 for a full test.

I needed to know.... I was supposed to have the results within 24 hours.

A week later, I still had not received a call from my doctor's, I assumed it was good news. But I figured I would call to make sure that my iron level were okay and that I would be ok to come off of the iron pills.

When I call the receptionist tells me "Oh you were next on my list", instantly I think "oh noooo, what is wrong?", she says " The doctor would like to see you, Your blood work is positive for Celiac, but she says it is not urgent so I will book you for our next available appointment in 2 weeks."

I started researching Celiac a little more deeply and EVERYTHING just made so much sense.

My grandmother had died of small intestine cancer, even though she always ate healthy.

I decided to not wait for my doctor and try out the gluten free diet. Within a week my vision was clear as water (still with glasses on of course), my brain was not foggy and I cleaned my car for an hour and a half without fainting. I was excited, FINALLY, finally I knew what was going on, and finally I knew that I was not just crazy.

After 2 weeks I started having normal stools, even though I still only went to the bathroom every other day, I did not have to go 5 times to the bathroom in order to get anything out.

On the day of my appointment, the doctor told me that my iron level was still very low, my Vitamin D level was extremely low, along with my B12. She had not tested for any other vitamin levels but she assumed that my other vitamin levels were low also...

Now it explained why I had had to slap myself in the face in order to stay awake when driving.

2 out of the 3 tests came up positive (TtG and EMA). However the doctor said that she wanted to make sure that it was not a false positive.

She said she would sent me for an endoscopy, HOWEVER I would have to eat really bad (gluten) again until the appointment.

I prayed that the appointment would be scheduled soon... I've dealt with issues all of my life, I had no issues going through another couple of weeks of that.

Though I got the call yesterday and my appointment is at the end of august (in over 3 months).

After the appointment I started eating gluten again. My vision started getting blurry after the second day, I started falling asleep at the wheel within 12 hours, my stomach cramps, acid reflux was back within 12 hours.

I refuse to go through this for another 3 1/2 months.... But I feel like I would be a woos if I just gave up and did not go.

Plus, let's admit it, Gluten free food is expensive, being a home owner, mother of 2 and having a boyfriend who eats very well, financially we just get by. The extra expense isn't easy to deal with.

In order to get a tax refund for gluten free food, I need a note from my doctor...

Has anyone done it? Waited 3 months+ after a positive blood test???

Please re assure me, I felt so sick last night that I started crying and told my boyfriend that I could NEVER do it.
 

 

 

 

 

 

 

 

 

 

[nvsmom]

I had a positive ttg IgA and a positive EMA too, and I chose not to bother with the endoscopic biopsy at that point. My tTG was rather high, and the questionable results (that could be caused by something else like an infection or Hashi's) are generally lower and closer to the normal range. The EMA test is highly specific to celiac (meaning very very few things can cause it) so if you have a positive EMA titre, then you are most likely a celiac. (I would say you are positive without a shadow of a doubt but that's just my own opinion.) Plus, the EMA only appears positive after extensive damage has been done to the intestines. It is sort of as if your body says, " something is damaging the intestine so let's wipe off the top layer of villi to try and get rid of the invader".

 

Because I had two positive tests, and symptoms similar to yours, I figured it must be celiac. If it looks like a duck and quacks like a duck, it's probably a duck, right? My doctor is lazy and didn't push for an endoscopy so I went gluten-free right away. As I see it, if I continue to have issues, I can go back for a biopsy at a later date and they can look for causes other than celiac disease, because I already know that I have that.

 

As for the tax refund, I'm not sure it is worth it in the end. I know at first the costs of gluten-free labelled food looks daunting but many of us who are taking our health seriously cut back on the amount of processed foods we ate to help ourselves heal. We did not trade wheat bread for gluten-free bread slice per slice becaues gluten-free processed foods (like bread and cereal) is just not very good for you. It tends to be higher in sugars and fats, lower in fibre, and it has less nutrients because it hasn't been "fortified" like wheat flour. For example, in my house, we used to go through 4 loaves of bread a week, we now go through 1 gluten-free loaf... really we are saving money on bread!  LOL

 

I have also heard (by the celiac association in my city) that claiming gluten-free costs can lead to a greater chance of audit. Coincidentally, there were a few members who were audited the first year they claimed it. I can't prove that it is true, but it sounds like our government doesn't it?  LOL

 

If you do go ahead with the biopsy, you probably don't need to eat 2 slices of bread a day. I imagine that a bit every day or two would be plenty because it can take weeks to months and months for the body to stop making auto-antibodies and then it takes time for the body to heal.  If you eat a cracker or sip a beer here or there, I am guessing that would be enough to keep the damaging inflammation going so you'll get a good biopsy.  Request at least 6 samples so they are more likey to catch the damaged areas - the small intestine has the surface area of a tennis court so if damage is patchy it can be missed.

 

Good luck with whatever you decide to do, and welcome to the board.

[GFinDC]

Hi DAW,

 

Welcome to the forum!

 

You really sound like a celiac to me, from your symptom description.  Did you notice any difference in your symptoms while you were preggers?  Just curious

 

Getting a tax deduction is kind of iffy I think.  You can only claim the difference in the cost of normal and gluten-free foods in the USA, not the full cost.

 

Can your doctor get an earlier endoscopy appointment?  Maybe you can contact the GI yourself and get on a awaiting list for openings.  You might get in earlier that way if you are flexible on scheduling.

 

It is really helpful to skip most of the gluten-free processed foods when starting the gluten-free diet.  Healing on the gluten-free diet is simpler when you remove anything processed and stick to whole foods you cook at home yourself.  That way you know exactly what you are eating vs trying to figure out what ingredient someone else used that might negatively affect you.  You can always add those processed gluten-free foods after a few months of healing and see if they work for you.

 

 

 

 

 

 

[dark-angel-warriore]

Thank you for the quick answers .

 

I figured claiming it would not be very beneficial for me., but I figured " oh hell, a little bit is better than nothing"

 

I guess I am just really scared.

I contacted my family doctor to see if I could get another appointment closer to where I live (because the appointment was set in a city that is an hour away from me, and I would have to take a day off, and have my boyfriend take a day off for the sole reason of driving me since I would be unable to).

She at first refused, and then when I explained why she said that I would have to find the doctor myself and she would send the referral.

Within 10min of me making phone calls I found a surgeon who does the procedure (no gastroenterologist in my area, but this doctor has done testing for celiac before).

She said they are booking for the begining of June right now. Which means I will probably only have to suck it up for 2 or 3 weeks.

That I can do

Havn't received confirmation of my appointment *fingers crossed*

 

 

I noticed a lot of people simply skipped the endoscopy stage.

I have been eating a fair amount of gluten in the past couple of days, but if I get the appointment in 2-3weeks then I won't have to gluten myself every single day anymore.

[dark-angel-warriore]

Hi DAW,

 

Welcome to the forum!

 

You really sound like a celiac to me, from your symptom description.  Did you notice any difference in your symptoms while you were preggers?  Just curious

 

Getting a tax deduction is kind of iffy I think.  You can only claim the difference in the cost of normal and gluten-free foods in the USA, not the full cost.

 

Can your doctor get an earlier endoscopy appointment?  Maybe you can contact the GI yourself and get on a awaiting list for openings.  You might get in earlier that way if you are flexible on scheduling.

 

It is really helpful to skip most of the gluten-free processed foods when starting the gluten-free diet.  Healing on the gluten-free diet is simpler when you remove anything processed and stick to whole foods you cook at home yourself.  That way you know exactly what you are eating vs trying to figure out what ingredient someone else used that might negatively affect you.  You can always add those processed gluten-free foods after a few months of healing and see if they work for you.

 

I don't remember any difference when I was pregnant. I was REALLY depressed when I was pregnant, I cried everyday and had really bad thoughts.

But I also selpt A LOT, about 12 to 14 hours a day  since I did not work at the time, so I was well rested by the time I woke up.

But that was 4 years ago and a REALLY bad experience (i love my son to death, but the pregnancy hormones did not do me any good at all).

[1desperateladysaved]

I am so glad to hear your test got moved up.  Sad you need to go through it, though.   It sounds to me like you have a definitive diagnosis with the blood test, reaction to diet, low nutrient levels and the grandmother's cancer.  I was diagnosed with gene test results, obvious symptoms, and reaction I declared to the diet.

 

Take the best supplements you can.

Diana

[psawyer]

The expense claim for taxes is not likely to help, but it may for some people.

 

The expense is the difference between the cost of a gluten-free item, and a similar item. If there is more than one person in the household, only the cost difference of the food eaten by the celiac is an expense. Let us say a loaf of gluten-free bread has 14 slices and costs $7. That is fifty cents per slice. A regular loaf costs, say, 2.40 and has 20 slices--.12 per slice. So, for each slice of gluten-free bread eaten by the celiac, an expense of 38 cents can be claimed. Keep detailed records for the year. Then, at tax time, the amount by which the expense exceeds 3% of your net income (line 236) can be claimed on line 330.

 

And, yes, there have been reports that claiming the expense may trigger an audit by the CRA.

[GFinDC]

I don't remember any difference when I was pregnant. I was REALLY depressed when I was pregnant, I cried everyday and had really bad thoughts.

But I also selpt A LOT, about 12 to 14 hours a day  since I did not work at the time, so I was well rested by the time I woke up.

But that was 4 years ago and a REALLY bad experience (i love my son to death, but the pregnancy hormones did not do me any good at all).

 

OK, thanks for responding!   Sometimes women say their symptoms are improved while they are pregnant,and then get worse afterwards.  There are some immune system changes during pregnancy that could explain that I think.

 

Congrats on possibly getting an earlier appointment.  Hopefully it will work out.  I didn't get an endoscopy myself.  It took me 3 months to get my initial appointment for blood testing, and I had gone gluten-free by that time.  So there wasn't any point in getting an endoscopy then I figured.  But I had really good symptom improvement on the gluten-free diet during that 3 month wait, so I knew it was the right thing for me to do.

[Deaminated Marcus]

Potatoes, rice, carrots are cheap replacements.

[dark-angel-warriore]

To be completely honest with you, the tax return thing isn't my biggest worry, and being audited isn't a big deal to me as we only claim for work income (pretty straight forward).

I would be the only one to eat glutten free in the house (unless my son tests positive when my doctor decides it is time to test him) so we would not be spending THAT much more, may an extra $5-10 on groceries every week, depending if I get baked goods.

But I just want a definite "YES you have it" for some reason, I don't want any "oh it might be positive because you are too stressed out".

I don't like going in the vague of maybes... But that is just me being a control freak and wanting to have control of my life (Celiac??)lol

But I am really scared of the enoscopy

I think I might regret if if I don't go through it, for my son, and my family (who would have to get tested even thought they are over sees and Celiac is not even close to being well known in Europe)

So I guess I just need to suck it up eh.

[psawyer]

Actually, celiac disease awareness in much of Europe is far greater than in North America.

[nvsmom]

Someone else posted this link in another thread. It is an excellent read and has a lot of current info on celiac disease.

 

On page 12 is a chart that shows how specific to celiac the EMA and tTG tests are. Specificity refers to the chance that a positive test result was caused by celiac. Sensitivity refers to the percentage of celiacs who would have a positive test (after consuming gluten for weeks) - as you can see, the tests don't catch everybody, but it did catch you.  

 

Open Original Shared Link

 

With the two positive tests, there is little doubt that you have celiac. False positives are very very rare... You know, you might want to show your doctor this report. LOL

 

When you do go back to your doctor, you might want to request nutritional testing. Most celiacs have deficiencies so you could be low in calcium, potassium, ferritin, iron, B's, and D. Hashimoto's hypothyroidism is more common among celiacs too; to test for that request a TSH, Free T4 and T3, and a TPO Ab.  Get copies of all labs so you can double check them and refer back to them to ensure your health is improving.

 

Best wishes.  

[dark-angel-warriore]

Actually, celiac disease awareness in much of Europe is far greater than in North America.

i was born and raised on a French Island, have no family in Canada, and even my aunt who is a nurse had no clue what Cliac was.

[psawyer]

Well, awareness certainly varies. Among people carrying the genes, ancestry from the British Isles and Scandinavia is common. Other parts of Europe are also prime sources. Some European countries routinely screen *ALL* children for gluten antibodies at a certain age.

 

We used to have an active member living in Paris, and his experiences there were good in terms of awareness. He has moved back to England and is no longer active here.

 

Celiac disease was first identified in Europe following World War Two. During the war, wheat was in short supply, and many went gluten-light of necessity. After the war, when wheat was again abundant, people started getting sick, especially children. It was noticed that the incidence of certain symptoms had diminished over the course of the war, but bounced back shortly thereafter.

[GFinDC]

Hi DAW,

 

Celiac awareness is something that we need to work on throughout the world.  It's changing for the better in recent years, but still has a ways to go.  May is actually celiac awareness month so this is a good time to let people know about it.  Actually anytime is a good time though.  Most people with celiac disease don't know they have it.  Many of them die each year without ever knowing why there were sick for years.  And their doctors didn't diagnose them during their lifetimes.  It's a pretty sad state of affairs, especially considering the cost of medical care these days.  10 years ago doctors thought the incidence of celiac disease was 1 in 10,000 people. Now we know it is closer to 1 in 133.  And the rate of celiac is supposedly increasing year over year.  Well, enough of that edumacation stuff.

 

Whether or not you get the endoscopy is entirely a personal choice.  There are a few things it can affect besides taxes.  If you were interested in participating in medical studies on celiac disease, they probably wouldn't accept you without a biopsy proven diagnosis.  If your children go to a public school they may get special foods easier if they are diagnosed.  If you are fully diagnosed it may make it easier for you to follow the gluten-free diet and stick to it.

 

All those are possible benefits of a diagnosis.  But that is again, totally a personal choice.  There is no gold star for doing the whole test process, and you are very welcome here on the forum without it.  Many of us don't have the full process behind us.  But we know how our bodies react when we get gluten in them.  The other thing to be aware of is NCGI, non-celiac gluten sensitivity.  NCGI was talked about by people with gluten reactions for years, before finally being proven to exist by researchers last year.  There are still no diagnostic tests for it though, and the incidence is much higher than for celiac disease.  Something like 7% of the population is what I think I read.  Anyway, it's a lot of people!  If you have NCGI, your antibodies to gliaden will be negative, and your biopsy also.  But NCGI can still make you sick with the same symptoms as celiac disease.

 

A French island sounds interesting!

[nosy parker]

Thank you for the quick answers .

 

I figured claiming it would not be very beneficial for me., but I figured " oh hell, a little bit is better than nothing"

 

I guess I am just really scared.

I contacted my family doctor to see if I could get another appointment closer to where I live (because the appointment was set in a city that is an hour away from me, and I would have to take a day off, and have my boyfriend take a day off for the sole reason of driving me since I would be unable to).

She at first refused, and then when I explained why she said that I would have to find the doctor myself and she would send the referral.

Within 10min of me making phone calls I found a surgeon who does the procedure (no gastroenterologist in my area, but this doctor has done testing for celiac before).

She said they are booking for the begining of June right now. Which means I will probably only have to suck it up for 2 or 3 weeks.

That I can do

Havn't received confirmation of my appointment *fingers crossed*

 

 

I noticed a lot of people simply skipped the endoscopy stage.

I have been eating a fair amount of gluten in the past couple of days, but if I get the appointment in 2-3weeks then I won't have to gluten myself every single day anymore.

 

Hi dark,

What is it that you are scared of exactly?  Is it the actual endoscopy?  I had both a colonoscopy and upper endoscopy done and I can tell you that prior to the exam I was freaking out about the upper endoscopy.  I was soooo nervous about that test.  It didn't make sense to anyone that of those two tests I was worried about that one, as most people freak out about the colonoscopy.  Anyway, I had a great GI, was mildly sedated initially for the colonoscopy which was ok, but quite uncomfortble at times.  Then for the upper endo my GI knew I was nervous and he upped the dose of sedative and I don't remember anything except waking up after the procedure.  If you can have sedation like that, then you have nothing to worry about.  Good luck with your decision.

[dark-angel-warriore]

Hi dark,

What is it that you are scared of exactly?  Is it the actual endoscopy?  I had both a colonoscopy and upper endoscopy done and I can tell you that prior to the exam I was freaking out about the upper endoscopy.  I was soooo nervous about that test.  It didn't make sense to anyone that of those two tests I was worried about that one, as most people freak out about the colonoscopy.  Anyway, I had a great GI, was mildly sedated initially for the colonoscopy which was ok, but quite uncomfortble at times.  Then for the upper endo my GI knew I was nervous and he upped the dose of sedative and I don't remember anything except waking up after the procedure.  If you can have sedation like that, then you have nothing to worry about.  Good luck with your decision.

i am just scared of the unknown I guess.

I am scared if would hurt, I am scared he will find something more, like other damage perhaps...

I am not sure.

BUT the appointment is next week, he said that I should not remember anything even though I will probably will it when it happens.

I don't react well to sedatives, they don't always work on me, but we will see.