Left To Self Diagnose

[tabbi68]

Hi Everyone,

I am writing after an incident last night that has left me thinking I am either completely right or completely wrong about my train of thought. Any input would be greatly appreciated.

Let me start with a little history (to put things in perspective, I am now 39 years old):

As a child, I made many trips to the hospital and doctor's office, eventually being diagnosed with a "nervous stomach" (nice cop-out of a diagnosis, I'd say). My father was an alcoholic and therefore there were stressful times but EVERY incident was preceded by family movie night - with treats - or a birthday party or something of that sort. I would end up with such severe cramping and D that my parents would have no choice but to bring me to the hospital. An 'immodium-type' injection and they'd send me on my way. Every incident would leave me so tired I that I was out of commission the next day. Eventually, I began living with the cramping and bloating and D....

When I was in college, I was diagnosed with Lactose Intolerance. Ahhhh....as my favourite snack as a child was Doritos, this could explain the cramps and D as Doritos have a lot of dairy in the flavouring.

So, initially I cut out milk altogether but, at the advice of my doctor, did begin 'weaning' myself back on...

I would say the gas, cramping and D, bloating, basic discomfort never completely went away (my husband often calls me a methand dispenser :-( ) but about 2 years ago something else started to happen.

- my mentstrual cycle began to get very irregular

- my memory started degrading

- I would wake up in the morning and feel like I was 80 trying to get out of bed...taking the stairs - forget it - the discomfort was unbearable. This would reoccur after sitting for just 15 minutes

- the bottoms of my feet hurt all the time

- I started feeling tired...all the time - in fact, when I would get home from work, it would be a chore for me to do anything but sit or lie down for the rest of the night

- I began feeling weakness in my legs and arms

- I was ALWAYS hungry....unlike many people with Celiac that I hear of, I have the opposite weight problem and could stand to lose about 70 pounds!

I also suffered from extreme depression....that began about 3 years ago and I have worked my way back...with a lot of help (I am not taking medication for this).

So, I have had MANY blood tests, and MRI and an ENG. I have seen an Neurologist. I have no diagnosis...they can find nothing "wrong" with me.

I am not sure exactly what types of blood tests were run, but Celiac was never mentioned. I only know that for months, my plateletts were high and they weren't sure why.

So, after much reading, I have gone gluten free. Overall, I am feeling much better. The extreme fatigue is gone. My head seems clearer and I am beginning to have normal bowel movements. I can honestly say that I do not have a bloated feeling any more and the methane dispenser nick-name is going away.

Now, I have not been as concerned with corn although I know some individuals do have a reaction to corn. Last week, in fact, I had a few corn nachos that seemed to be just fine. HOWEVER, last night I had Tostitos ... ingredients - whole white corn, veg oil, salt... I had approximately 15 chips and within 5 minutes, I was in the washroom with cramping and D so severe I thought I would pass out or throw up. When everything finally subsided, about 1/2 hour later, I just had the energy to make it to my room and lie down...it was 8:30 at night - I was out until 7:00 this morning...very abnormal for me. My mom & daughter said all my colouring was gone...they were afraid...and I was taken back to those incidents as a little girl with a "nervous stomach".

Again, keeping in mind that I am overweight and not underweight, do you think this could be celiac?

Any help/advice would be appreciated.

Tracy

[holdthegluten]

Hi Everyone,

I am writing after an incident last night that has left me thinking I am either completely right or completely wrong about my train of thought. Any input would be greatly appreciated.

Let me start with a little history (to put things in perspective, I am now 39 years old):

As a child, I made many trips to the hospital and doctor's office, eventually being diagnosed with a "nervous stomach" (nice cop-out of a diagnosis, I'd say). My father was an alcoholic and therefore there were stressful times but EVERY incident was preceded by family movie night - with treats - or a birthday party or something of that sort. I would end up with such severe cramping and D that my parents would have no choice but to bring me to the hospital. An 'immodium-type' injection and they'd send me on my way. Every incident would leave me so tired I that I was out of commission the next day. Eventually, I began living with the cramping and bloating and D....

When I was in college, I was diagnosed with Lactose Intolerance. Ahhhh....as my favourite snack as a child was Doritos, this could explain the cramps and D as Doritos have a lot of dairy in the flavouring.

So, initially I cut out milk altogether but, at the advice of my doctor, did begin 'weaning' myself back on...

I would say the gas, cramping and D, bloating, basic discomfort never completely went away (my husband often calls me a methand dispenser :-( ) but about 2 years ago something else started to happen.

- my mentstrual cycle began to get very irregular

- my memory started degrading

- I would wake up in the morning and feel like I was 80 trying to get out of bed...taking the stairs - forget it - the discomfort was unbearable. This would reoccur after sitting for just 15 minutes

- the bottoms of my feet hurt all the time

- I started feeling tired...all the time - in fact, when I would get home from work, it would be a chore for me to do anything but sit or lie down for the rest of the night

- I began feeling weakness in my legs and arms

- I was ALWAYS hungry....unlike many people with Celiac that I hear of, I have the opposite weight problem and could stand to lose about 70 pounds!

I also suffered from extreme depression....that began about 3 years ago and I have worked my way back...with a lot of help (I am not taking medication for this).

So, I have had MANY blood tests, and MRI and an ENG. I have seen an Neurologist. I have no diagnosis...they can find nothing "wrong" with me.

I am not sure exactly what types of blood tests were run, but Celiac was never mentioned. I only know that for months, my plateletts were high and they weren't sure why.

So, after much reading, I have gone gluten free. Overall, I am feeling much better. The extreme fatigue is gone. My head seems clearer and I am beginning to have normal bowel movements. I can honestly say that I do not have a bloated feeling any more and the methane dispenser nick-name is going away.

Now, I have not been as concerned with corn although I know some individuals do have a reaction to corn. Last week, in fact, I had a few corn nachos that seemed to be just fine. HOWEVER, last night I had Tostitos ... ingredients - whole white corn, veg oil, salt... I had approximately 15 chips and within 5 minutes, I was in the washroom with cramping and D so severe I thought I would pass out or throw up. When everything finally subsided, about 1/2 hour later, I just had the energy to make it to my room and lie down...it was 8:30 at night - I was out until 7:00 this morning...very abnormal for me. My mom & daughter said all my colouring was gone...they were afraid...and I was taken back to those incidents as a little girl with a "nervous stomach".

Again, keeping in mind that I am overweight and not underweight, do you think this could be celiac?

Any help/advice would be appreciated.

Tracy

It sounds like celiac to me, or maybe a gluten intolerance issue. Don't be fooled in thinking you may not have celiac because you havent lost weight. About 1/2 of celiacs dont have weight loss at all, and many gain weight. You may check and see if you are hypothyroid also (hashimotos) it is pretty common in woman with Celiacs Disease. Stick to a gluten free diet and get your thyroid checked. Google hashimotos disease and see if the symptoms make any sense. Good luck to you and follow what your body is telling you. A food diary might be a good idea, as many celiacs have other food intolerances as well. God Bless You.

[CarlaB]

It could be celiac .... if you are still eating gluten, I'd ask for the blood test. Weight gain and weight loss are common with celiac.

It could be a bacterial overgrowth of the intestines (Google SIBO, Klebsiella and you will get some info on this). If this is late-stage, it will cause weight loss.

Also, and I ONLY bring this up because the bottoms of your feet hurt. These are also symptoms of Lyme Disease ... bottoms of feet hurting is a symptom of a Bartonella co-infection. Weight gain is more common with Lyme, but weight loss also happens.

I'd go throug the testing for ALL of these so that you get some idea of where your health problems are coming from.

The celiac panel is a blood test.

The bacterial overgrowth is a 3 day stool test.

The Lyme test MUST be done by IGeneX (Open Original Shared Link). Your doctor won't use this lab unless you contact IGeneX and have a test kit sent to you ... take it to your doctor to do for you.

Gluten is so toxic that many people feel better gluten-free but do not get completely well ... some people have a genuine gluten intolerance, others just feel better when they don't eat it. The Tostitos are gluten-free.

[grommet]

>>

Now, I have not been as concerned with corn although I know some individuals do have a reaction to corn. Last week, in fact, I had a few corn nachos that seemed to be just fine. HOWEVER, last night I had Tostitos ... ingredients - whole white corn, veg oil, salt... I had approximately 15 chips and within 5 minutes, I was in the washroom with cramping and D so severe I thought I would pass out or throw up. When everything finally subsided, about 1/2 hour later, I just had the energy to make it to my room and lie down...it was 8:30 at night - I was out until 7:00 this morning...very abnormal for me.

Just a thought on the nachos. It may be nothing to do with the corn itself.

Although there may be no gluten IN the snack, the are often produced with other snacks in a non gluten-free environment.

This cross contamination is enough to make me very ill.

[bakinghomesteader]

I don't really know what to say, but I wanted to add something about the Tostitos, too. Everytime I eat any variety of Tostitos, I get sick again. I tried the all natural ones and the baked bowls. Both are gluten free, but everytime I get sick. I don't know what it is except maybe it is cc. Just thought I would let you know.

[jerseyangel]

I would suspect CC from the chips. What happens to a lot of us is that the longer we're off gluten, the more sensitive we become to tiny amounts of it.

I use very few processed foods because of this.

[tabbi68]

I would suspect CC from the chips. What happens to a lot of us is that the longer we're off gluten, the more sensitive we become to tiny amounts of it.

I use very few processed foods because of this.

I am so glad to hear that! Not that I'm glad others are feeling the pain I did but that there is an explanation even though there isn't any outright Gluten in the product....I assume CC is cross contamination? I'm just familiarizing myself with everything.....

Tracy

[jerseyangel]

I am so glad to hear that! Not that I'm glad others are feeling the pain I did but that there is an explanation even though there isn't any outright Gluten in the product....I assume CC is cross contamination? I'm just familiarizing myself with everything.....

Tracy

Hi Tracy,

I'm sorry--yes, CC=cross contamination. It's the bane of our existance!

[Nancym]

I have problems with lots of things, not just gluten. But I think corn is an issue for me too. Anyway, I think the key is to listen to your body and get a handle on everything it reacts to, not just the gluten. The healing is a process that can take a long, long time. Perhaps after you're well healed from the gluten damage you can handle other things but be prepared for it to be a multi-year process.