Looking For Good Celiac Doc In Slc Utah

[srthomas21]

I have some neurological symptoms that I believe are caused by Celiac but I can't find a doctor who will listen to me. They all seem to think Celiac will only present itself with stomach issues. One second of research will show otherwise so I need a new doctor.

[natand]

I have some neurological symptoms that I believe are caused by Celiac but I can't find a doctor who will listen to me. They all seem to think Celiac will only present itself with stomach issues. One second of research will show otherwise so I need a new doctor.

I may be jumping the Gun right now, because I have only seen this Doctor a few times and do not have a diagnosis yet, but perhaps this may be helpful to you. I have been experiencing some really overwhelming neurological symptoms, such as brain fog, Poor memory, odd feeling in my hands and feet. The list goes on as far as my symptoms are concerned. I am seeing a doctor Named Dr. Douglas Smith. He practices in the Taylorsville center on 4700 South and Bangerter.

I had never even though of Celiac before a few weeks ago. Dr. Smith first Suggested it might be a Vitamin D deficiency and ran tests for that. I almost rolled my eyes at this suggestion but I have let him do what ever tests he feels necessary because I just want to feel well again. He was right and I have a severe Vitamin D deficiency. He also ran a tissue Transglutimanase test on me and the result came back 12. From my research a 9 is a high positive. I am waiting to hear back from him this week to see what he thinks of all of this and what might be the next course of action. So I have not been diagnosed Celiac at this point. However at the least Dr. Smith is aware of the possibility and willing to listen to me and is willing to run the tests necessary to find out. Perhaps he may be a good option for you as well. I will let you know, if you like, what happens with my diagnosis and my continued feeling about this DR.

[srthomas21]

Hi

Yes that would be great. Can you list your complete symptoms? Maybe we have some similar symptoms. Any issues with your eyes? I'm sensitive to bright lights and place like shopping centers, jazz games etc are killers.

Is this doc a gastro or a GP?

My energy levels suck as well.

Let me know and thanks for the reply.

[srthomas21]

Has he run the celiac blood panel on you yet?

[natand]

Has he run the celiac blood panel on you yet?

Keep in mind, as I said before, I may be jumping the gun a little. I have not been diagnosed. Surprisingly, Dr. Smith is just a Family Practitioner. He has done a lot of blood tests on me but as far as know Celiac related, all he has done in my blood labs is the tissue transglutaminase Ab, IaA and the result was 12. From what I have found in my research a 9 is a high positive. I am sure this Doc will continue investigating and I assume with this result he will have me do a complete Celiac blood panel. And probably an intestinal biopsy. I don't know for sure, I should hear from him tomorrow or tuesday. I have elevated Liver Labs and he has scheduled me to go for an ultrasound on my liver.

As far as my symptoms go the list is so long that I honestly have asked myself if I am a hypochondriac. How can anyone possible have all these symptoms? Because of this, I had procrastinated seeing a doctor. However the more I look into Celiac, the more I see that I am not a hypochondriac, this very well may be what I have. So here goes, Brain Fog, Bad memory, misplacing words in everyday sentences even when I am not having a migraine( Such as I asked my son "have you eaten all of your homework? ", I said "I need to unbuckle the front door", "I need to make some soup to use up this cheese and lettuce", I meant to say celery and carrots, weird statements like this involuntarily, almost daily) ,odd sensations in my hands and feet, obesity with inability to lose weight no matter how many calories are cut or how much I exercise, stroke symptom migraines(loss of vision, sensitivity to light and sound, numbness in my tongue, and the side of my face, arm and sometimes leg, slurred speech and misplacement of words), strobing in the sides of my vision, Black spots that come and go in my peripheral vision, Spots and floaters in my eyes, eye prescription gets stronger every time I see the eye doctor, upset stomach, diarrhea several days per week, heartburn, anxiety, depression, Extreme fatigue yet unable to sleep at bed time, heart palpitations, feeling completely drained when exercising (still force myself to do it but it's not getting any easier), Brain overload (I can not focus on more than one thing at a time).

So as you can see most of my symptoms are neurological, and I am overweight, not underweight like the average Celiac. I never would have thought that this is what I might have, in fact I had never even heard of Celiac before, until very recently. So I guess I will see soon, if this is what I have or not.

I explained all these symptoms to this doctor and he has not for one minute made me feel like I am crazy, he listens and actually looks for a solution. I do not know what my final diagnosis will be but I do feel confident that this is a good doctor to stay with, I think he will figure it out.

Perhaps he might work for you as well. You said SLC, perhaps Taylorsville is close enough.

[natand]

I have some neurological symptoms that I believe are caused by Celiac but I can't find a doctor who will listen to me. They all seem to think Celiac will only present itself with stomach issues. One second of research will show otherwise so I need a new doctor.

Hello, I wanted to give you an update. I got a call from my doctors nurse today to talk about my results. The nurse says that The reference for my transglutaminase blood test goes up to a 19 being in the normal range, and they don't believe that a 12 is high enough to consider for Celiac disease. So No further testing on me, will be done for Celiac at this time. Therefore I do not know if you want to see this doctor or not.

I personally feel like, why not just eliminate Gluten anyway. You do not need to have a doctor tell you that you have Celiac to change your diet, which is the treatment plan for Celiac anyhow. I am going to try to eliminate Gluten from my own diet for a few months to see if it makes me feel better.

Sorry I could not be more helpful to you. Good luck in feeling better.

[srthomas21]

Hello, I wanted to give you an update. I got a call from my doctors nurse today to talk about my results. The nurse says that The reference for my transglutaminase blood test goes up to a 19 being in the normal range, and they don't believe that a 12 is high enough to consider for Celiac disease. So No further testing on me, will be done for Celiac at this time. Therefore I do not know if you want to see this doctor or not.

I personally feel like, why not just eliminate Gluten anyway. You do not need to have a doctor tell you that you have Celiac to change your diet, which is the treatment plan for Celiac anyhow. I am going to try to eliminate Gluten from my own diet for a few months to see if it makes me feel better.

Sorry I could not be more helpful to you. Good luck in feeling better.

I really think they should run a Celiac panel on you. Also blood tests can come back negative but it doesn't mean you don't have Celiac. I am also overweight and I am diagnosed with Celiac disease. I'm not sure if I made that clear. I'm just looking for another doc who really understands what Celiac does to the body. My current gastro only thinks it cause stomach issues which is clearly not the case. A lot of my symptoms have improved since going gluten free but I'm not 100% yet. The symptoms you have could be Celiac related and some of those I have.

I would also have your Doc check for low ferratin levels. They usually will not check for this especially if all your other blood is fine such as crit levels. I was not absorbing iron because my gut was inflamed and my Ferratin got down to like 4 even though my other blood was fine. My low ferritan caused all sorts of stuff. I was tired, had heart pounding, any exercise would make me fatigued, my chest felt tight etc. Ferratin is your bodys iron stores and optimally they should be around 70 though 20 is considered low normal. Mine is now up to 30 after taking a iron supplemant and all of the weird heart stuff went away.

I also have elevated liver enzymes which can be a sign of Celiac disease. Headaches and brain fog are a very common symptom of Celiac as well.

Do you feel really hungry, almost hypoglycemic a lot? That was a big thing with me. After I ate I still felt like I was starving. I was not absorbing any nutrients because of the Celiac and I had no gastro symptoms at all. I also had a lot of anxiety and some depression with it.

I would press your doc for the Celiac blood panel and have him check Ferratin . If you have Celiac you could be deficient in a lot of vitamins including all the B vitamins which can cause neuro symptoms. I personally believe that gluten is a neurotoxin to me. I felt wacked out of my mind when I was eating gluten. Major brain fog and I had this weird ratchet thing in my neck. After being off gluten for 3 days the brain fog went away. However if you deficient in vitamins and other things it can take a long time to recover from that because the gut takes a long time to heal. I have been taking a lot of vitamins and supplements which have been helping to restore the proper nutrients to my body.

One other thing you might want to check is your testosterone levels. Misplacing words is a common sign of low testosterone.

I felt really bad for nearly a year because docs didn't understand the neuro symptoms of Celiac. I've been off Gluten for 6 months and do fell better but I'm not over the hump yet.

Let me know if I can help and thanks for keeping in touch.

Scott

[natand]

I have some neurological symptoms that I believe are caused by Celiac but I can't find a doctor who will listen to me. They all seem to think Celiac will only present itself with stomach issues. One second of research will show otherwise so I need a new doctor.

Hello,

Thanks for your reply. You suggested my doc check my ferritin levels and he already has. They are at 86, and he also checked My B12 Which is quite high, the reference from my lab says up to 950 and mine is 1035. Also Vitamin D Is very low, Ref 50-80, mine is a 14. And I have elevated liver labs. Honestly I don't really know what all of this means. I have attached all my lab results in case you might have any more insight. Thanks for your help.

Tissue Transglutaminase Ab, IgA

Tissue Transglutaminase Ab, IgA. 12

11/12/2009

Ferritin

(ng/mL) 86

11/12/2009

TrIIodothyronine, Total

T3 121

(ng/dL)

11/12/2009

Free T4 (Free Thyroxine)

T4, Free 1.36

Comprehensive Metabolic Panel

11/06/2009

K 4.2

ALT 63

Na 135

Ca 9.1

AST 52

Cl 105

Creatinine 0.76

CO2 24

Prot 7.1

Anion Gap (Na Cl CO2) 6

GFR Est. by MDRD eq. >60

Alb 3.8

Bili, Total 0.5

BUN 12

Alk Phos 73

Glucose 78

11/12/2009

Urine Macro

11/06/2009

Color Normal

Appear Normal

Nitrite Negative

Hgb, Ur Negative

Glucose, Ur Negative

Collect Method, Ur Urine

Leuk Esterase Negative

Ketones, Ur Negative

Sp Gr, Ur 1.012

Prot, Ur Negative

Urine Microscopics

11/06/2009

Bact Negative

RBC, Ur 3

WBC, Ur 2

Mucus 1

Epi, Ur 2

Manual Differential

11/06/2009

Diff Type Manual Diff

RBC Morph NORMOCYTIC & NORMOCHROMIC NCNC

Lymphs, Abs 2.2

Plt Est Agrees with count PLTOK

Mono, Manual 8

Lymph % 29

Neut, Manual 63

Neut, Abs 4.9

Mono, Abs 0.6

Vitamin D 25 Hydroxy

25 Hydroxyvitamin D2 And D3 14

11/06/2009

Thyroid Stimulating Hormone

TSH 1.89

(uIU/mL)

11/06/2009

pH 5.5

CBC Without Diff

11/06/2009

RBC 4.60

HGB 14.8

MPV 9.8

MCHC 34.6

MCH 32.1

Nucleated RBCs,

MCV 92.8

PLTS 220

Hct 42.7

WBC 7.7

RDW 13.1

Vitamin B-12 (RIA)

B12 1035

(pg/mL)

[natand]

I really think they should run a Celiac panel on you. Also blood tests can come back negative but it doesn't mean you don't have Celiac. I am also overweight and I am diagnosed with Celiac disease. I'm not sure if I made that clear. I'm just looking for another doc who really understands what Celiac does to the body. My current gastro only thinks it cause stomach issues which is clearly not the case. A lot of my symptoms have improved since going gluten free but I'm not 100% yet. The symptoms you have could be Celiac related and some of those I have.

I would also have your Doc check for low ferratin levels. They usually will not check for this especially if all your other blood is fine such as crit levels. I was not absorbing iron because my gut was inflamed and my Ferratin got down to like 4 even though my other blood was fine. My low ferritan caused all sorts of stuff. I was tired, had heart pounding, any exercise would make me fatigued, my chest felt tight etc. Ferratin is your bodys iron stores and optimally they should be around 70 though 20 is considered low normal. Mine is now up to 30 after taking a iron supplemant and all of the weird heart stuff went away.

I also have elevated liver enzymes which can be a sign of Celiac disease. Headaches and brain fog are a very common symptom of Celiac as well.

Do you feel really hungry, almost hypoglycemic a lot? That was a big thing with me. After I ate I still felt like I was starving. I was not absorbing any nutrients because of the Celiac and I had no gastro symptoms at all. I also had a lot of anxiety and some depression with it.

I would press your doc for the Celiac blood panel and have him check Ferratin . If you have Celiac you could be deficient in a lot of vitamins including all the B vitamins which can cause neuro symptoms. I personally believe that gluten is a neurotoxin to me. I felt wacked out of my mind when I was eating gluten. Major brain fog and I had this weird ratchet thing in my neck. After being off gluten for 3 days the brain fog went away. However if you deficient in vitamins and other things it can take a long time to recover from that because the gut takes a long time to heal. I have been taking a lot of vitamins and supplements which have been helping to restore the proper nutrients to my body.

One other thing you might want to check is your testosterone levels. Misplacing words is a common sign of low testosterone.

I felt really bad for nearly a year because docs didn't understand the neuro symptoms of Celiac. I've been off Gluten for 6 months and do fell better but I'm not over the hump yet.

Let me know if I can help and thanks for keeping in touch.

Scott

Sorry, I forgot to mention, I don't usually feel super hungry, I go long periods of time having to force myself to eat and quite often end the day under on my calorie intake. However I also have bouts every few weeks or so, where I cant get to feeling satisfied, My mother calls it voraciousravenousitis, but that only happen occasionally. And as far as testosterone is concerned, it has not been checked but I am a women and I constantly have to maintain my facial hair, if it were not for my constant maintenance, I would be a bearded lady. So I have suspected it might be high. I did not talk to my Doctor about this only because it is the least of my worries, but maybe it is related. I really don't know what I have at this point. I still think I may go gluten free for some time, to see how my body responds. And maybe continue on with asking my doc to keep checking. At this point I do not have any follow ups scheduled, only an ultrasound on my liver and I am trying to decide if that is really necessary at all. My liver labs are only a few points high and I wonder if I cant get that down by exercising more, and a liver cleanse. I do not know, I feel super frustrated, and I was almost relieved, thinking I had the answer and now I do not. Thanks again

[srthomas21]

Hi

I looked at my transglutimase test and mine was 18. On my test it says anything above 4 is high. I honestly would not rule out celiac yet. You gave many celiac type symptoms and according to my labs 12 would be high. You really need to have the complete celiac panel.

My mom also has celiac and her first blood tests were negative but she had a biopsy done on her small intestine and it showed vili atrophy which is caused by celiac.

I would insist on the celiac panel which is aga igg and aga iga. After you do this blood test I would then go gluten free and see if any neuro symptoms dissapate. Some of my neuro stuff went away in a week.

Many people on this forum had negative blood work but still were gluten intolerant. The labs are not perfect.

I assume you are now taking a vitamin d supplement? That could make a big difference as well.

One thing I have learned is that celiac affects everyone differently so there are no typical symptoms which is a mistake a lot of docs make.

I know it sucks being sick. I'm 31 and should be living life not worrying about my health every day. I think I'm slowly getting better but still have a ways to go. You might have your answer with celiac. It gets to the point where you hope they can find something wrong with you so you at least you know your not crazy.

From your labs it looks like your doc has covered a lot. I would still pursue celiac. From what you've told me it still seems the most likely culprit.

Let me know what you decide. I am impressed that your doc checked vitamin d. Most don't. New research is coming out now that shows just how important that vitamin is for overall health. I take 10000 per day of vitamin d.

Hope you can figure it out.

Oh. I'm not sure what role testosterone plays in women but wouldn't hurt to ask but most likely not your issue.