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New Here...is Gluten My Problem?

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#16 Jake'sMom87

 
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Posted 18 August 2013 - 08:50 AM

I'm really sorry to hear that :( autoimmune thyroid problems can be a pain to diagnose. Do you know if thyroid disease runs in your family? Your symptoms sound like hyperthyroidism to me (Graves disease) - the anxiety, eye inflammation/'popping out', etc.


I have symptoms of both hypo and hyper. My mother has hypo but not very bad. She only went to the doctor for fatigue and weight gain and that's when they found it. She took herself off her medication because it was giving her heart palpitations.

My folate is low and my ferritin level is 12 so I think that's low also even though it does fall within my doctor's normal range. I have trouble getting the docs to take me seriously and test me for things also because of my age (26). I actually had one doctor tell me that I'm young and I should just be happy that I have a long life ahead of me! Unbelievable.

I see my GP tomorrow for a follow up so I will ask about the thyroid tests as well as possibly doing the celiac tests. I've been struggling with this for 2 years and it's hard to stay hopeful that I will ever get better.

Will keep you posted!

Robin
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#17 cyclinglady

 
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Posted 18 August 2013 - 10:41 AM

Your ferritin is too low.  Another sign of celiac disease.  

 

I have been swinging back and forth (hypo and hyper) for the past two years after being hypo for over 15 years.  The hyper times were the worst!  Super anxiety that was completely uncharacteristic.  I was diagnosed with celiac disease in March.  Since then, my doc and I have working on the thyroid issue.  I cut back on meds, and became very hypo and then slowly (six months), we began increase my thyroid meds (I do not want to experience being hyper again!).  When I reached 4.26 on my TSH result, my doc (new) was satisfied (was in the "range"), but I was still hypo.  Now, I'm a .8 and I feel great (don't want to go any lower).  Anything for me between a 1 and under a 3 is ideal.  I can really tell the difference.  

 

I'll probably have to back down on my meds, (hopefully) as I my intestines improve on a gluten free diet. 

 

Your Mom needs to go back to the doctor for a thyroid panel too.  She probably was getting too much thyroid medication (thus, the heart palpitations).   All thyroid patients should be tested once a year (if stable) and every six weeks (when adjusting meds) until stability and desired results are reached.  

 

Keep eating gluten until you get tested.  And push for both celiac and thyroid tests!  Everyone here has given you excellent advice.


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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#18 0range

 
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Posted 18 August 2013 - 01:33 PM

 

  • blurry vision/seeing spots - can occur in celiac disease (ivitis or uvitis?) but it can be vision threatening and should be checked out - my SIL has this so I know it shouldn't be treated lightly
  • diarrhea at least 3 times a week - common in celiac disease
  • brain fog/fuzziness - common in almost every autoimmune disease including celiac disease and thyroiditis
  • occasional feelings of loss of balance - gluten ataxia happens in celiac disease

 

Wanted to mention that these symptoms can be seen with thyroid problems as well (I'm currently seeking a celiac dx as well, and honestly am not sure which is which!). If you have hyperthyroidism, you can have eyesight problems such as blurry vision. Diarrhea and weight loss can happen too. I personally have been diagnosed with benign paroxysmal positional vertigo (the IBS of the vertigo world... which is another way of saying "you have vertigo but we don't know why!").


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Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum


#19 Jake'sMom87

 
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Posted 18 August 2013 - 05:39 PM

Wow...thank you so much for all the info. I need to write this stuff down because when I get to the doctor I like totally forget all my reasons for being there. It provokes so much anxiety in my. I keep telling me my mom to go back to the doctor but she said she's fine. Talking to you all has made me feel so much more calm about this whole situation. Answers will come eventually.

I have a question though about stomach bloating/cramping in celiac...I have had what I would consider minimal cramping ever since I can remember and bloated oh yes when I was younger. Now I'm overweight so if I'm bloated I really don't notice it. Honestly I thought it was normal because it's never caused me more than minimal pain. So I asked my boyfriend about it just to get another idea of what someone else feels after they eat. He had no idea and he said he never gets cramps or anything. I have almost constant sensation that I have to go #2 even if it's hours before I actually feel the urgency to go. So now it makes me wonder if this is a symptom. I should also mention that my stomach makes noises all the time. Again pretty painless but quite embarrassing if I am in a meeting or something. Any thoughts.

Orange - I'm curious to hear the results of your celiac tests.

Robin
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#20 0range

 
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Posted 18 August 2013 - 07:13 PM

Wow...thank you so much for all the info. I need to write this stuff down because when I get to the doctor I like totally forget all my reasons for being there. It provokes so much anxiety in my. I keep telling me my mom to go back to the doctor but she said she's fine. Talking to you all has made me feel so much more calm about this whole situation. Answers will come eventually.

I have a question though about stomach bloating/cramping in celiac...I have had what I would consider minimal cramping ever since I can remember and bloated oh yes when I was younger. Now I'm overweight so if I'm bloated I really don't notice it. Honestly I thought it was normal because it's never caused me more than minimal pain. So I asked my boyfriend about it just to get another idea of what someone else feels after they eat. He had no idea and he said he never gets cramps or anything. I have almost constant sensation that I have to go #2 even if it's hours before I actually feel the urgency to go. So now it makes me wonder if this is a symptom. I should also mention that my stomach makes noises all the time. Again pretty painless but quite embarrassing if I am in a meeting or something. Any thoughts.

Orange - I'm curious to hear the results of your celiac tests.

Robin

 

No problem! I find the majority of symptoms really overlap with thyroid and celiac. Both are autoimmune issues and can affect the gastrointestinal tract -and- other areas (constipation if hypo, diarrhea if hyper). I was feeling very good last year after starting thyroid meds, but earlier this year I started having insane bloating out of nowhere. Other symptoms that do not make any sense have popped up as well (like the neurological problems) despite my thyroid numbers being within range. My stools look very odd too (pale coloured with 'corn' pieces TMI even though I don't eat any corn? haha). I just did the blood test for celiac on Saturday, and am awaiting the results! Will post here regarding what we find. I'm actually getting a colonoscopy done as well next Saturday, to rule out IBD since I have some overlapping symptoms after contracting measles 2 years ago. Are you due for a celiac blood test soon? 


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Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum


#21 Lock

 
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Posted 19 August 2013 - 04:15 AM

 

I have blurry vision in my left eye most of the time and that eye sort of "pops out" more than the other one.  Sometimes it causes pain behind it which I think is inflamation. 


 
Robin

 

I think you should definitely be assertive about being referred to specialists. The eye popping out and inflamed behind it is the thyroid being hyper. It can swing hyper and hypo in the process of failing. The blood levels on any one day are meaningless and can have nothing to do with how you are feeling. My mom's thyroid was "in normal range" for two years while they worked her up for Alzheimer's before her thyroid finally quit completely, and she got treated with Synthroid. When her blood levels were stable right in the middle of the range suddenly she was 100% better and she no longer has the terrible symptoms we thought were Alzheimer's. You being 26 is a big challenge, I've been there. Don't let the primary doctor blow you off. In my opinion you need to see an endocrinologist for a complete thyroid evaluation and also a gastroenterologist for a complete investigation including celiac.
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#22 cyclinglady

 
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Posted 19 August 2013 - 10:28 AM

Thanks again for your replies.  I do feel like I have hypothyroid.  I have the majority of those symptoms but I thought my Free T 4 was okay.  I go back to GP on Monday because he had sent me to a dermatologist for my petechaie and she didn't know what was causing it.  I asked her about vitamin deficiencies causing that since I do have deficiencies and she said if it was from that they would be on my legs, not my arms and chest.  So called my GP and told him I need further testing.  It's quite scary to just let these things go.  I will ask him about further testing for my thyroid and if he doesn't want to I will look into seeing an endo. 

 

Orange - I totally know what you mean about the anxiety thing.  I have suffered anxiety all my life and panic attacks however this was way different.  I actually thought I might drop dead.  I have blurry vision in my left eye most of the time and that eye sort of "pops out" more than the other one.  Sometimes it causes pain behind it which I think is inflamation.  Brain fog I get off and on throughout the day. And I have terrible night vision which causes me to stumble around.  I'm only 26 and I feel like I'm 80.  I can't keep up with my friends much less my son.  Thankfully I have a desk job so I can still work, but if it was anything physical I would have given up by now.

 

Juliebove - Do you have celiac?  My symptoms started after I had my son at age 2.5 years ago.  I also have some sort of neuropathy in my feet, hands, and lower legs.  I have GERD which I've had since I was a teen.  I really try to take it easy since I never know when I will get one of these attacks. 

 

Robin

Eye popping -- that sounds a lot like Grave's Disease (hyper thyroid).  This is nothing to mess with.  My mom has Grave's.  She went too long before treatment and has permanent eye damage.  (Imagine driving and always see two speedometers on the the dashboard).  The funky glasses she was prescribed did not help.  She had to quit working and must close one eye to see only one image.  

 

During my bouts of being hyper thyroid, I had eye pain (from the muscles around my eyes, but they didn't start popping).  Plus, I had muscle weakness in other areas of my body.  

 

Get checked out by an ophthalmologist as well.


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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




Celiac.com - Celiac Disease Board Moderator

#23 Sable's Mom

 
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Posted 19 August 2013 - 03:11 PM

Hi, I'm new also.  About a year ago, my dr after listening to my abdomen & asking if I had alot of belly pain, just briefly mentioned that I might want to try to go "gluten-free".  I looked & labels for a couple days, & there was so much else going on in my life, (being laid off from a job, husband's hours getting cut @ his job, holidays approaching) I sorta dismissed the whole "gluten free" thing.   About a month ago, I started experiencing some pretty severe abdominal pain, along with gas, bloating & crazy diarrhea.  I tried to watch what I was eating to see if I could discern a pattern, to no avail.  I am diabetic so did intense research on the medication that I take & thought it might be that.

Having no health insurance at the present, I called my dr's office & talked to the nurse.  She quickly dismissed my idea of my diabetic medicine doing this to me since I have been on it for quite a long time.  She said she had 2 or 3 family members who had recently gone "gluten-free" and were feeling SO SO MUCH BETTER.  so, I have "tried" to do that for about a week now.  Last weekend, we had a friend over for dinner & I grilled hamburgers.  I just totally forgot & put my hamburger on a bun & ate it. YIKES!!!  Oh the pain....So, I have become 'crazy out of my mind' trying to research this whole thing.  My niece has the same issue.  She was tested & she tested negative.  She lives in New York & I live in Indiana, so my mission this evening is to contact her & talk to her about it.  My husband wanted pizza this past Friday evening, I new better than to try that, so I ordered bbq wings, but that probably wasn't too smart an idea either, not knowing what ingredients were in the sauce,  SO, once again, the weekend was spent in pain!

I have a couple questions, if anybody would be so kind as to share their thoughts?

1) Once I accidently eat something that is gluten laden... how long does it take normally for the pain/symptoms to dissipate?

2) My stomach was a bit upset the other evening, so I made a banana smoothie (banana, ice, milk, sweetener) it seemed to calm my stomach down a bit.  Is there anything that has been shown to alleviate the symptoms?

 

thanks for any & all suggestions/advice.   I am glad to have found this forum!!!


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#24 Jake'sMom87

 
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Posted 19 August 2013 - 03:11 PM

Just saw my GP today. He didn't seem concerned with my eye, although most times it looks normal. When it looks larger is when I have pain with it which I wasn't having at the moment. He is testing me for vasculitis and inflammatory issues since I have petechiae. It's not what I wanted, but I'm happy if he wants to test away and let's get to the bottom of this. I mentioned my thyroid levels and he said all your tests so far have been perfect. He said, "you're the healthy patient I have". Okay that doesn't change how I feel inside. If these tests come back normal I'm going to see an endocrinologist. If it is my thyroid I think I am swinging back on forth. Because I also have extreme fatigue and weakness. I will let you guys know what I find out. I'm really appreciate all the support I'm being shown here especially considering I don't have celiac (at least not that I know of).

Robin
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#25 Abthiede

 
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Posted 21 August 2013 - 08:29 AM

This was totally me last year around this time. I thought I was going crazy!! I'm still without a diagnosis, but recently began the journey of diagnosing celiac. Good luck to you! You're not alone!!
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#26 Jake'sMom87

 
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Posted 21 August 2013 - 09:44 AM

That's interesting.  So you don't feel like that anymore?  Are you gluten-free?

 

Robin


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#27 Rachel2writer

 
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Posted 21 August 2013 - 01:03 PM

Yikes - a TSH that high is definitely too high IMO. The newer ranges ARE between .3 and 3.0, I agree.

 

I have thyroid disease for 18 years. I've learned through years of research and becoming my own champion that a TSH near 5.0 makes me feel miserable. Mine hovers (treated on armour thyroid) right around 1.0 for me to feel well. Check info on http://www.stopthethyroidmadness.com/ for tons of great information about thyroid testing, optimal ranges, and treating for symptoms, not just a number on a lab test.

 

Good luck!


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#28 Jake'sMom87

 
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Posted 21 August 2013 - 08:02 PM

Yikes - a TSH that high is definitely too high IMO. The newer ranges ARE between .3 and 3.0, I agree.
 
I have thyroid disease for 18 years. I've learned through years of research and becoming my own champion that a TSH near 5.0 makes me feel miserable. Mine hovers (treated on armour thyroid) right around 1.0 for me to feel well. Check info on http://www.stopthethyroidmadness.com/ for tons of great information about thyroid testing, optimal ranges, and treating for symptoms, not just a number on a lab test.
 
Good luck!


Hi! Yes I've heard the same things about the TSH range, but how do I get my doctor to understand this? It's so frustrating. I'm miserable everyday and they won't look past the result falling within the normal range. That site is great!
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#29 nvsmom

 
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Posted 21 August 2013 - 09:42 PM

I had to go in search of "alternative" doctors who were willing to prescribe natural dessicated thyroid before I found a doctor who "gets it". My current TSH is 0.01 (range is 0.20-6.00) and my free T3 is 5.6 (range 3.5-6.5) and I feel the best I have in years in spite of the fact that my TSH would freak out most doctors.  My family doctor said I was normal and healthy as soon as my TSH got below a 6; once I argued synthroid increases so my TSH got to a 3, my doctor refused to go any lower even though I felt no better. I went doctor hunting and I'm glad I did.

 

Good luck!


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#30 Jake'sMom87

 
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Posted 22 August 2013 - 08:01 AM

I had to go in search of "alternative" doctors who were willing to prescribe natural dessicated thyroid before I found a doctor who "gets it". My current TSH is 0.01 (range is 0.20-6.00) and my free T3 is 5.6 (range 3.5-6.5) and I feel the best I have in years in spite of the fact that my TSH would freak out most doctors.  My family doctor said I was normal and healthy as soon as my TSH got below a 6; once I argued synthroid increases so my TSH got to a 3, my doctor refused to go any lower even though I felt no better. I went doctor hunting and I'm glad I did.

 

Good luck!

 

Thanks for the reply.  Yeah I have been to numerous doctors for all of my issues.  But after talking to you guys I know I have identified at least one of the culprits (my thyroid).  I just need to keep working to find a doctor who will help.  It's discouraging because it takes so much time and money to keep seeing all these people with no help.  What do you think about holistic doctors?  I heard great things about one where I live, but I guess I'm under the impression that they don't run tests and diagnose people.  I could be completely wrong... 


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