Something Going On In Addition To Celiac Disease?

[Valerie2622]

The reality is, I don't feel well, and I need some suggestions as to what sort of doctor I should see next// any other suggestions. 

 

Here is the list of symptoms I have: (I am twenty years old and I am female)

-Panic attacks 

-Fatigue

-depression/anxiety INCREASED

-difficulty walking up stairs (recently I also fell while going up the stairs, but typically it's just heart palpitations and out of breath when doing stairs)

-body goes numb when jogging even if I only jog for thirty seconds

-no appetite (have lost fifteen pounds and I wasn't overweight before)

-pain in my legs when walking around occasionally (it shoots down the entire leg, sometimes both legs)

-two instances in the past month of a new rash showing up on my thighs and then disappearing

 

 

Diagnosis I already have:  (and because of celiac disease I am gluten free dairy free)
Celiac disease

Autism

 

Tests I have already had within the last year which ALL came back NORMAL:
Nuclear stress test

Echocardiagram of my heart

thyroid levels

vitamin levels
CBC (complete blood count)

Amylase/ lipase levels 

Please help me get to the root of these issues. I'm happy to answer any questions if additional information would be helpful.

 

 

[beth01]

Have you had your antibody levels redrawn to see if you are getting cross contamination from somewhere?  Do you have a shared kitchen?

[RMJ]

Based on your other posts I believe you have only been gluten free for about three or four months? It often takes longer than that for celiac symptoms to go away. You may just need to be patient.

[trents]

  On 6/14/2015 at 12:03 AM, Valerie2622 said:

The reality is, I don't feel well, and I need some suggestions as to what sort of doctor I should see next// any other suggestions. 

 

Here is the list of symptoms I have: (I am twenty years old and I am female)

-Panic attacks 

-Fatigue

-depression/anxiety INCREASED

-difficulty walking up stairs (recently I also fell while going up the stairs, but typically it's just heart palpitations and out of breath when doing stairs)

-body goes numb when jogging even if I only jog for thirty seconds

-no appetite (have lost fifteen pounds and I wasn't overweight before)

-pain in my legs when walking around occasionally (it shoots down the entire leg, sometimes both legs)

-two instances in the past month of a new rash showing up on my thighs and then disappearing

 

 

Diagnosis I already have:  (and because of celiac disease I am gluten free dairy free)

Celiac disease

Autism

 

Tests I have already had within the last year which ALL came back NORMAL:

Nuclear stress test

Echocardiagram of my heart

thyroid levels

vitamin levels

CBC (complete blood count)

Amylase/ lipase levels 

Please help me get to the root of these issues. I'm happy to answer any questions if additional information would be helpful.

 

And these symptoms appeared after you have been trying to eat gluten-free? Or have these been present all along?

 

Is there a chance you have been significantly exposed to some environmental toxin, perhaps in the work place?

[Valerie2622]

Thanks for the replies. I have been eating gluten free dairy free for over three months now. I understand it often takes longer than that to heal, but things feel like they are getting worse instead of better. The symptoms I have listed are new (except the anxiety/depression is increased but not new). I have not been exposed to any toxins- i work at a very clean office setting.

 

I do share a kitchen with my parents who are not gluten free. Perhaps that's the issue. I have asked numerous times to switch over our household and my parents hate the idea. My mom is slightly more open to it than my dad though. (I don't have any siblings)  I'll try asking again.

 

[kareng]

  On 6/14/2015 at 4:28 PM, Valerie2622 said:

Thanks for the replies. I have been eating gluten free dairy free for over three months now. I understand it often takes longer than that to heal, but things feel like they are getting worse instead of better. The symptoms I have listed are new (except the anxiety/depression is increased but not new). I have not been exposed to any toxins- i work at a very clean office setting.

 

I do share a kitchen with my parents who are not gluten free. Perhaps that's the issue. I have asked numerous times to switch over our household and my parents hate the idea. My mom is slightly more open to it than my dad though. (I don't have any siblings)  I'll try asking again.

 

 

Do you have your own PB, margarine tub - things that people double dip into and get crumbs in?  A separate gluten-free toaster?  A gluten-free colander for rinsing gluten-free pasta or fruit?  You might be able to make this work out as a shared household.  It will depend on your parents willingness to not spread their crumbs around.  Not use the same spoon while making gluten-free and regular pasta, etc.  

 

I don't know if you are making your own food or if your mom is making some or all of it?  You may need to be responsible for all your own food or even get your own place.

[icelandgirl]

Hi Valerie...

I'm so sorry to hear about your ongoing struggle. That's so hard! I will tell you that after going gluten free I initially felt better and then spent several months feeling a whole lot worse until things improved again. I've heard others on here share that experience as well so maybe it is part of the healing.

My first thought was thyroid testing, but you say that came back normal? Did they do a full panel? Many Dr's will only do a TSH test and that does not give a good picture of your thyroid health. Do you know if you were tested for Hashimotos?

Do you know if your ferritin was tested? All of my blood counts were fine but my ferritin was at 15 (15-150)...thats not good and was causing me to get out of breath when going upstairs etc.

As for what Dr to go to...not sure...maybe your GP if you feel comfortable with him/her. Bring the list of symptoms with you.

At home do you have your own dedicated cooking space and equipment? If not, there could be cross contamination going on. Does your family use regular flour? The dust from that gets on everything. Hopefully if you can help your family understand how important it is for you to be 100% gluten free they can help create a safer environment for you.

Big hugs to you...I hope you get this figured out soon!

[Valerie2622]

  On 6/14/2015 at 8:52 PM, icelandgirl said:

Hi Valerie...

I'm so sorry to hear about your ongoing struggle. That's so hard! I will tell you that after going gluten free I initially felt better and then spent several months feeling a whole lot worse until things improved again. I've heard others on here share that experience as well so maybe it is part of the healing.

My first thought was thyroid testing, but you say that came back normal? Did they do a full panel? Many Dr's will only do a TSH test and that does not give a good picture of your thyroid health. Do you know if you were tested for Hashimotos?

Do you know if your ferritin was tested? All of my blood counts were fine but my ferritin was at 15 (15-150)...thats not good and was causing me to get out of breath when going upstairs etc.

As for what Dr to go to...not sure...maybe your GP if you feel comfortable with him/her. Bring the list of symptoms with you.

At home do you have your own dedicated cooking space and equipment? If not, there could be cross contamination going on. Does your family use regular flour? The dust from that gets on everything. Hopefully if you can help your family understand how important it is for you to be 100% gluten free they can help create a safer environment for you.

Big hugs to you...I hope you get this figured out soon!

I only had the TSH test- is there another one out there to ask for? I haven't ever been tested for Hashimotos. 

What is ferritin anyways? My blood work says I'm at a 13 but it wasn't flagged because it says normal is anywhere from 10-200.

I'll keep working on my parents about going gluten free within our house. 

At this point, I think my doctor thinks I'm crazy I've been there so many times. But hey- most of the results were from October 2014 so maybe it's time to redo them?

Thanks for the hug- I needed it

 

[icelandgirl]

I'm so glad the hug helped. I've got lots of those!

For thyroid you would also want Free T3 and Free T4 along with 2 antibody tests: TPOAb and TgAb.

Ferritin is a measure of the stored iron in your blood. From what I've read having low ferritin can be the first indicator of iron deficiency anemia. Having a rock bottom number like you and I have is not great. You could try eating more iron rich foods. Taking an iron supplement might be needed, but you would want to have your Dr drawing blood every few weeks as you don't want to overdo the iron. Here is some information about the additional iron tests, including ferritin:

Open Original Shared Link

You aren't crazy no matter what your Dr thinks. You had to likely push for lots of testing as many of us had to do. But you were right in doing so. Listen to your body...You know when something isn't right.

(((hugs)))