Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Still Trying To Figure Things Out

Nic

By Nic
in Related Issues & Disorders

Recommended Posts

Nic Collaborator
Nic
Posted
  • Author

Endo. doc. called this afternoon and left a message that his Free T4 is normal and if I have any further questions to call him. I am so discouraged. I thought for sure this was going to be it. So what will happen now, he will just continue to gain weight at this speed? He will be 70 pounds before he is 5. And the night sweats will just continue as well as needing to be drugged to sleep? I was waiting for this Endo. appointment because I felt positive they would help me. Now I am right back where we started from. I looked up the info. that georgie relayed about the new TSH range. But I am very confused. Can someone explain why if the range goes up to 3.5 then how can 2.966 now be concidered hypo. And why wouldn't this doctor know this?

Nicole

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
Can someone explain why if the range goes up to 3.5 then how can 2.966 now be concidered hypo. And why wouldn't this doctor know this?

Because most Dr.'s wouldnt consider 2.966 as Hypo. Its within the normal range. Some alternative or Naturopath Dr.'s would be more likely to say anything over 2.0 *might* be Hypo and they would be more likley to offer treatment. Not so much the mainstream dr.'s though. Also if his T4 and T3 arent low and he's not experiencing typical hypo symptoms its not likely that they would treat him for it.

I'm sorry you still dont have answers but obviously something isnt right so you may need to pursue other possibilities?? Has he been tested for other things? I cant recall if you already said this but is he gluten-free? Has that been ruled out as a possibility?

Nic Collaborator
Nic
Posted
  • Author
Because most Dr.'s wouldnt consider 2.966 as Hypo. Its within the normal range. Some alternative or Naturopath Dr.'s would be more likely to say anything over 2.0 *might* be Hypo and they would be more likley to offer treatment. Not so much the mainstream dr.'s though. Also if his T4 and T3 arent low and he's not experiencing typical hypo symptoms its not likely that they would treat him for it.

I'm sorry you still dont have answers but obviously something isnt right so you may need to pursue other possibilities?? Has he been tested for other things? I cant recall if you already said this but is he gluten-free? Has that been ruled out as a possibility?

No he isn't gluten free. He is negative for the Celiac antibodies. But he does have the gluten senstivity genes (as does everyone else according to Dr. Fine). I am willing to explore all possibilities but the trick is getting these doctors to agree there is something wrong.

Nicole

Rachel--24 Collaborator
Rachel--24
Posted
No he isn't gluten free. He is negative for the Celiac antibodies. But he does have the gluten senstivity genes (as does everyone else according to Dr. Fine). I am willing to explore all possibilities but the trick is getting these doctors to agree there is something wrong.

Nicole

I was negative for Celiac as well. I tested positive through Enterolab and have the sensitivity genes. Not that I believe those genes tell me anything....since everyone has them. :rolleyes:

I did test positive for antibodies and Ttg through Enterolab.

Gluten didnt turn out to be the *main* cause of my illness....however it *became* a problem (as did alot of other things) due to the Lyme Disease.

Putting him on the diet might actually help him. It could solve the problem or it could at least reduce symptoms while you continue to work with Dr.'s on anything else that could be causing this.

I've been on the diet a year and a half. Even though I didnt get "better" simply by eliminating gluten...I'd be much worse consuming it because it would aggravate an already bad situation by putting extra stress on my immune system.

It wouldnt hurt to try out the diet and see if there are any benefits in your sons case. Keep in mind it could be a problem....but not the *only* problem. So hypothetically, if his night sweats improve but hes still gaining weight....I wouldnt say that the diet isnt helping because it *did* help in some ways. There just could be more involved.

Also, if hes reacting to gluten and that is the *sole* cause of his symptoms....the Dr.'s arent gonna be much help since he's not testing positive for Celiac. He *can* be getting these symtpoms from gluten and *not* have Celiac. The only way to know this would be to try the diet....unless of course you are still persuing testing for Celiac....in that case he would need to stay on gluten for those tests.

Ksmith Contributor
Ksmith
Posted

Sorry to say, but my post won't be helpful...however, I just wanted to mention that my niece had hypotonia as an infant--she almost died from it. Anyway, she is overweight (she's now 11 yrs. old)--her mother, my sister, is a nutritionist, and so I feel like she's overweight because of her problems as an infant not a result of how she was brought up. She was slow to develop, had seizures, and still has some speech problems. She's the sweetest girl ever and I feel sorry that she has to deal with the problems of being overweight. I'm curious to know how related hypotonia is related to childhood obesity. I feel for you Nicole--Good Luck!

georgie Enthusiast
georgie
Posted
Endo. doc. called this afternoon and left a message that his Free T4 is normal and if I have any further questions to call him. I am so discouraged. I thought for sure this was going to be it. So what will happen now, he will just continue to gain weight at this speed? He will be 70 pounds before he is 5. And the night sweats will just continue as well as needing to be drugged to sleep? I was waiting for this Endo. appointment because I felt positive they would help me. Now I am right back where we started from. I looked up the info. that georgie relayed about the new TSH range. But I am very confused. Can someone explain why if the range goes up to 3.5 then how can 2.966 now be concidered hypo. And why wouldn't this doctor know this?

Not all Drs know how to dx and treat thyroid. Your Dr still hasn't tested Free T3 or Antibodies. You may find like me that the T4 is 1.0 over the line into being normal and the Antibodies are high. If your Dr doesn't even test - you will never know.

Did you know that before 1970 that there weren't any blood tests for thyroid ?? So - they are still learning all the time what is normal and what isn't. The TSH range has been changed 2 or 3 times in last 30 years , and is still under review. You have to understand that blood tests are never 100% accurate anyway. I tested negative to Celiac but def am Gluten Intolerant and I believe I have DH - so if so - am 100% Celiac.

You need a Dr that is willing to test thyroid properly, and also is prepared to trial some meds. My Dr is a normal MD and her group all use TSH > 2 as suspicious for HypoThyroid. I have just watched a conference actually - where the lecturer said the same. I saw 10 Drs over 30 years that failed to understand thyroid. It happens a lot. Two of those Drs were Endos and one was a Professor....

Nic Collaborator
Nic
Posted
  • Author
Sorry to say, but my post won't be helpful...however, I just wanted to mention that my niece had hypotonia as an infant--she almost died from it. Anyway, she is overweight (she's now 11 yrs. old)--her mother, my sister, is a nutritionist, and so I feel like she's overweight because of her problems as an infant not a result of how she was brought up. She was slow to develop, had seizures, and still has some speech problems. She's the sweetest girl ever and I feel sorry that she has to deal with the problems of being overweight. I'm curious to know how related hypotonia is related to childhood obesity. I feel for you Nicole--Good Luck!

Well when Lucas was a baby, hypothyroid was the first thing everyone wanted to check. The doctors all said that the combination of his hypotonia, developmental delays (primarily gross motor), and the fact that the soft spot on his head was wide open until over 2 years all pointed to hypothyroidism. If there is no hypothyroid that I am not sure if there is a correlation between hypotonia and childhood obeisty. I see with my son that he eats healthy and he does not eat a lot. He will always go for fruits and vegetables if they are offered. He is no less active than my older son although he does have less stamina than his brother. What I find interesting is that they (really the Endocrinologist) will not even entertain other hormonal problems because of his height. It is hard to say that his growth is not affected by what is going on because he is on the taller side for 4. How do we know what his real growth potential is? For example, my older son Jacob was diagnosed with Celiac at 4 and a half years old. He weighed 45 pounds and was 43 inches tall. He was in the 90th percentile at the time. So he never looked malnurished except for the dark circles, grey skin, and the pot belly. Well low and behold, a year and a half later, and strictly gluten free and eating healthy, he has gained 15 pounds and grew 5 and a half inches. So while he never looked short before, compared to his height now, he was not growing to his potential. Does that make sense to anyone else or am I just rationalizing my own theories?

Nicole

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
So while he never looked short before, compared to his height now, he was not growing to his potential. Does that make sense to anyone else or am I just rationalizing my own theories?

It makes sense to me. I didnt realize you already have a diagnosed Celiac in the family. It seems like there would be a strong liklihood that the diet would also help your younger son.

Nic Collaborator
Nic
Posted
  • Author
It makes sense to me. I didnt realize you already have a diagnosed Celiac in the family. It seems like there would be a strong liklihood that the diet would also help your younger son.

My father and my aunt (and many cousins) are also diagnosed Celiac. With my little one, it seems like no matter what he gets tested for, no matter how many symptoms of that disease he may have, he is always negative. Therefore, you are probably right and the gluten free diet may be worth a try. Thanks again for the help.

Nicole

Nic Collaborator
Nic
Posted
  • Author

So I talked to the pediatrician this morning and told him how the endo. doc didn't want to test for anything because of his height. I asked what we should do now. He said, "well, I guess diet and exercise. That just infurates me because he does not eat badly and gets enough exercise (between gymnastics, gym class, physical therapy, and just playing). I asked what about the night sweats and he said he has no idea. I asked if sleep apnea is possible as he does wake up choking and is frequently breathing heavy and noisely from his mouth. Also the waking frequently and the night sweats. I also read somewhere that enlarged tonsils can cause an obstruction in the throat causing sleep apnea. His tonsils take up his whole throat (almost anyway). The doctor said it is possible and that I should video him sleeping. Is this the usual way to detect sleep apnea? And why do I have to keep coming up with new theories? I would like some advice if anyone has any, should I switch doctors? I have been jumping around with doctors since he was born because I know in my gut there is something wrong and no one is helping me.

Nicole

georgie Enthusiast
georgie
Posted

Nic, Sleep apnoea is often a Hypo symptom. Do a google search...

Second opinions are always good. Be your own advocate. Do your research. Its sad but true that it is necessary to do this.

Nic Collaborator
Nic
Posted
  • Author

Late yesterday I figured since the Endo. doc only left a message on my machine I would call him back to make sure there is nothing else to look for. He of course said no but went on to say that the night sweats and the wakefulness may be a personality thing :ph34r: . What? So it is part of his personality that he cannot stay asleep and he is drowning in his own sweat every night? The day of the appointment the doc told me that Lucas' body mass index is high but if he was 18 it would not be :blink: . Well thats good news, in about 14 years he will be fine, can't believe this idiot. In the mean time, my sister uses a wonderful pediatrician that used to be mine when we were little. She is not in my insurance network so we cannot use her but we trust her completely. My sister called her to get her opinion and she agrees with me that someting is very wrong. She said she wants to see him free of charge because based on the symptoms she feels it sounds like Sotos Syndrome which is a condition where children grow too much in the beginning of life but then as they reach puberty even out and stay at a normal size but always in the upper percentile. Intergestingly enough all of his symptoms do match even the the ones from infancy. She said she would have to see him to be sure that it could be a possibility and if it is she will make a call to associates at Columbia University in NY and get him in to specialists there. I believe it would be a Neurologist and a Geneticist. So, I don't even care if she is dead wrong at this point, I am just so happy that a doctor agrees this is not ok. Any thoughts on this, let me know but I thank everyone who has responded to this thread because it really does help to remind me that I am not crazy.

Oh yeah, hypothyroid is a symptom of Sotos Syndrome.

Nicole

georgie Enthusiast
georgie
Posted

That's great news Nicole. I hope this Dr can help you further or perhaps she has a collegue that is on your insurance plan. Fingers crossed !

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease. It will not show if you have active Celiac disease. Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies. The...
    2. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases...
    3. McKinleyWY
      - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast. All my life I have avoided bread and most products containing enriched flour as they contain yeast (when making the man made vitamins to add back in to the flour). Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat...
    4. trents
      - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you...
    5. Peace lily
      - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748
    tcpb
    Newest Member
    tcpb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.