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More Testing And Sooooo Confused.

Bobbijo6681

By Bobbijo6681
in Coping with Celiac Disease

Recommended Posts

Bobbijo6681 Apprentice
Bobbijo6681
Posted

I was diagnosed in January with Celiac after both a postive blood test and endoscope biopsy. I have been very diligant about gluten for at least the last 2 weeks, but have been careful since being diagnosed. Last week I went back to see my GI and he ordered more blood work and an ultrasound of my abdomen. The nurse called yesterday and my Liver Fuction test came back abnormal as well as an elivated SED rate. They want to check both of these again in 6 weeks and then we will go from there. In the mean time I am FREAKING out??? What does all of this mean? Now what?

To add to this I am so angry with doctors that I have a hard time believing what any of them say. Last January I started this journey due to painful swelling in my feet and legs (periphal Neuropathy)after seeing my PCP he was unsure of the cause so sent me to an ortho, he didn't have a clue and sent me to a Neurologist. He knew from the second I he started asking me questions that I had a B12 deficiency. He ordered the lab work to confirm and told me to follow up with the PCP. After the results showed B12 near 150 I was scheduled to see my PCP. After reviewing all of my symptoms and problems that were going on, he proceeded to tell me that the B12 was not causing my pain, and in fact he believed that I was depressed and that depression can cause real pain. I asked multiple questions about the B12 defiency and he had no clue about it, but yet he demanded that taking a B12 supplement would not help. How do you know that? He wanted to prescribe anti depressants and I refused to take the prescription. NOW I find out that the defiencey was probably caused due to the Celiac disease, and that the B12 defiency can cause the "depression" symptoms that he wanted to treat. I am not a depressed person, but at the time I was in so much pain, I rarely left the house except to go to work, I couldn't sleep because of the pain, and I rarely ate. Although those are all signs of depression, they were caused because I was in pain, not because I was depressed. I changed doctors after I was treated so poorly by this one, and although my current PCP is much more attentive, I still feel that I know more about what I am dealing with than they do.

Well to make a long story short...(well I already blew that I think) any suggestions to help in the next 6 weeks? I should mention that in that time I will be traveling for 2 different weeks during this time frame as well...I am already nervous about that, but have been doing as much research as possible before hand so I hope that all goes ok.

Thank You in advance for any ideas you can offer, otherwise thanks for letting me vent alittle!!

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sandsurfgirl Collaborator
sandsurfgirl
Posted

Vent away. Doctors are so often complete morons. I had a doc try to get me to take Prozac for my thyroid symptoms instead of trying another thyroid medicine or upping my dose!!! He was like a crack dealer. "Just try it. You'll feel great. Prozac makes you feel so good. You won't regret it if you try it." To this day I want to curse when I think of that idiot.

Why don't you call back and ask them some questions about the tests? Tell them that you are very nervous hearing this and you need more info.

I googled SED rate and it says that inflammation can elevate it. Well as celiacs we have lots of inflammation from gluten.

Here's a little article about the liver enzymes. Open Original Shared Link

Get a copy of your labs and find out if they are highly elevated or just slightly.

Bobbijo6681 Apprentice
Bobbijo6681
Posted
  • Author

Vent away. Doctors are so often complete morons. I had a doc try to get me to take Prozac for my thyroid symptoms instead of trying another thyroid medicine or upping my dose!!! He was like a crack dealer. "Just try it. You'll feel great. Prozac makes you feel so good. You won't regret it if you try it." To this day I want to curse when I think of that idiot.

Why don't you call back and ask them some questions about the tests? Tell them that you are very nervous hearing this and you need more info.

I googled SED rate and it says that inflammation can elevate it. Well as celiacs we have lots of inflammation from gluten.

Here's a little article about the liver enzymes. Open Original Shared Link

Get a copy of your labs and find out if they are highly elevated or just slightly.

Sandsurfgirl,

Thanks for making me think a little bit....When I was first having problems my SED rate was elevated...DUH!! Ok I feel much better about that. The nurse said with the Liver tests it could be anything from medication to potential liver diseases. That is why they want to retest in 6 weeks. My biggest concern with that is that my younger cousin just passed away last year with something to do with his liver. I have my dad putting in calls to my aunt to figure out exactly what he had, as neither my dad or I know the specfics, just that he had problems with this liver. I think that is what scares me the most. Will they give me copies of my Labs? I never thought to ask, she just said that the liver fuction was elevated, do they assume that we know what that means? I often feel like I know more than they do about my health, but I don't know about all these techical terms that they use.

Thanks again for making me think...that helps me calm down a little. Thank goodness for a place like this!!!! All of my friends and family are supportive, and no one gives me a hard time about what to eat and when...but still no one gets it, they try, but they just don't understand!

Lisa Mentor
Lisa
Posted

After six weeks of gluten free, my bet is that your SED levels will go down. It will help with with a low fat foods as well. But eating fresh foods and healthy snacks will do it.

ravenwoodglass Mentor
ravenwoodglass
Posted

It is not uncommon for SED rate and liver panels to be a bit off when we are diagnosed. For most of us these resolve after we have been gluten free for a while and have healed. Try not to worry just follow up on it with the retesting and make sure you are checking all you need to for gluten and making the changes you need in your household.

CHARBEEGOOD Newbie
CHARBEEGOOD
Posted

I was diagnosed in January with Celiac after both a postive blood test and endoscope biopsy. I have been very diligant about gluten for at least the last 2 weeks, but have been careful since being diagnosed. Last week I went back to see my GI and he ordered more blood work and an ultrasound of my abdomen. The nurse called yesterday and my Liver Fuction test came back abnormal as well as an elivated SED rate. They want to check both of these again in 6 weeks and then we will go from there. In the mean time I am FREAKING out??? What does all of this mean? Now what?

To add to this I am so angry with doctors that I have a hard time believing what any of them say. Last January I started this journey due to painful swelling in my feet and legs (periphal Neuropathy)after seeing my PCP he was unsure of the cause so sent me to an ortho, he didn't have a clue and sent me to a Neurologist. He knew from the second I he started asking me questions that I had a B12 deficiency. He ordered the lab work to confirm and told me to follow up with the PCP. After the results showed B12 near 150 I was scheduled to see my PCP. After reviewing all of my symptoms and problems that were going on, he proceeded to tell me that the B12 was not causing my pain, and in fact he believed that I was depressed and that depression can cause real pain. I asked multiple questions about the B12 defiency and he had no clue about it, but yet he demanded that taking a B12 supplement would not help. How do you know that? He wanted to prescribe anti depressants and I refused to take the prescription. NOW I find out that the defiencey was probably caused due to the Celiac disease, and that the B12 defiency can cause the "depression" symptoms that he wanted to treat. I am not a depressed person, but at the time I was in so much pain, I rarely left the house except to go to work, I couldn't sleep because of the pain, and I rarely ate. Although those are all signs of depression, they were caused because I was in pain, not because I was depressed. I changed doctors after I was treated so poorly by this one, and although my current PCP is much more attentive, I still feel that I know more about what I am dealing with than they do.

Well to make a long story short...(well I already blew that I think) any suggestions to help in the next 6 weeks? I should mention that in that time I will be traveling for 2 different weeks during this time frame as well...I am already nervous about that, but have been doing as much research as possible before hand so I hope that all goes ok.

Thank You in advance for any ideas you can offer, otherwise thanks for letting me vent alittle!!

WOW...some of your story sounds like mine. Don't you just hate it when they say "depression" let me give you something for that! My PCP sent me to a Neurologist who's first words were..."your just depressed". I refused the drugs and demanded the test-my B12 was 189 so I know exactly what you mean about exhaustion, pain and no desire to eat. My Neurologist sent me to another specialist because he was to make sure that he has covered all the basis. (Personal I think he was hoping to be told I was depressed) I already go told this was not so..

Keep us posted. Remember there are always people to talk to.

Reba32 Rookie
Reba32
Posted

Do you live in the US? Do you eat a lot of processed foods? If yes to both, watch your ingredients labels for high fructose corn syrup. It is processed by the liver, and converts and stores as fat. If your liver function is reduced because of Celiac (which is possible), then feeding it HFCS certainly won't help it!

I serioulsy think that stuff should be banned.

I hope they explain the labs to you. I hate it when they think we know what they're talking about. :P

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Bobbijo6681 Apprentice
Bobbijo6681
Posted
  • Author

Do you live in the US? Do you eat a lot of processed foods? If yes to both, watch your ingredients labels for high fructose corn syrup. It is processed by the liver, and converts and stores as fat. If your liver function is reduced because of Celiac (which is possible), then feeding it HFCS certainly won't help it!

I serioulsy think that stuff should be banned.

I hope they explain the labs to you. I hate it when they think we know what they're talking about. :P

Yes I live in the US, and I have been trying my best to stay away from processed foods. I know that those are harder to control for gluten so I am trying to make everything myself, from scratch, or eating natural foods. I do drink pepsi though and I know that has HFCS. I will try to switch over to that Pepsi Throwback though that has natural sugar instead of HFCS, because I am not ready to give up my pepsi yet. I had given it up for a while before being diagnosed Celiac, but decided after diagnosis that I wasn't giving up everything at the same time. I figure that the gluten is the most important thing to eliminate right now and will work on the pepsi after I get the gluten diet under control.

Thanks for all of the thoughts everyone!!

newgfcali Rookie
newgfcali
Posted

I do drink pepsi though and I know that has HFCS. I will try to switch over to that Pepsi Throwback though that has natural sugar instead of HFCS, because I am not ready to give up my pepsi yet. I had given it up for a while before being diagnosed Celiac, but decided after diagnosis that I wasn't giving up everything at the same time. I figure that the gluten is the most important thing to eliminate right now and will work on the pepsi after I get the gluten diet under control.

Thanks for all of the thoughts everyone!!

Bobbi... when you're ready to give up the Pepsi, try going to seltzer water. I had to give up diet pepsi because of the sweetner (that's another story) and I just don't like "plain water". But the bubbles in seltzer water are just like a soda, so for me it satisfied that need for bubbles to feel quenched. Give it a try. There's also club soda, but that has added sodium which we don't need.

ravenwoodglass Mentor
ravenwoodglass
Posted

Bobbi... when you're ready to give up the Pepsi, try going to seltzer water. I had to give up diet pepsi because of the sweetner (that's another story) and I just don't like "plain water". But the bubbles in seltzer water are just like a soda, so for me it satisfied that need for bubbles to feel quenched. Give it a try. There's also club soda, but that has added sodium which we don't need.

Good idea. I often mix plain or lightly flavored unsweetened seltzer water with a bit of freah orange juice or another bottled one. Tasty and no or low sugar.

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