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New Here...is Gluten My Problem?

symptoms gluten

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#1 Jake'sMom87

 
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Posted 03 August 2013 - 08:35 AM

Hi all! I'm new here and just looking for advice/opinions on my situation. I have been suffering many odds symptoms since I had my son 2.5 years ago. Since I was young I've suffered from anxiety, depression, fatigue, and gerd. After I had my son everything went downhill. I am constantly so tired and have zero energy to do anything at all. I also have:
Headaches
Muscle pain/weakness
Anemia
Low D & B6, but normal B12
stomach aches especially after eating
everyday heartburn
excess mucus in my throat (worse after eating)
petechaie
dry skin and scalp
blurry vision/seeing spots
diarrhea at least 3 times a week
brain fog/fuzziness
occasional feelings of loss of balance
anxiety, starting to feel depressed
peripheral neuropathy
feeling of fullness after eating small amounts
hot flashes/feeling like I will faint
aches and pains all over
tingling face/mouth/fingers

I'm sure I'm missing something, but in the beginning I just had a few of these issues and now I have all of them. I have been to many doctors and specialists and nobody has told me anything other than anxiety and tried to put me on meds (tried them and felt worse). I'm at the point where I struggle to do daily activities. I think it's unlikely that gluten is causing my problems, however I'm looking for insight since they can't find anything else. I just really want my life back and I hate being this way since I don't get to spend good time with my son like he deserves.

Should I consider the testing? I really don't want to waste any more money on doctors.

I appreciate you taking the time to read this - I just don't know where else to go...

Thank you!

Robin
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#2 nvsmom

 
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Posted 03 August 2013 - 10:13 AM

Welcome Robin.  :)

 

You have a lot of issues going on. I think celiac disease could be a possiblity but so could a few other problems that have common symptoms.  I can give you my interpretation based on my own experiences and what I have learned (besides the fact that doctors help very little with chronic ill health ;) ).

 

This is what I think:

  • Headaches - could be celiac disease, hypothyroidism or other issues. My migraines were caused by celiac disease and aspartame
  • Muscle pain/weakness - celiac disease or hypothyroidism, often takes a long time to resolve
  • Anemia - common in celiac disease due to low iron, ferritin and B12; could be thrombocytopenia (low clotting) which causes easy bruising, heavy meanstration, and petichiae
  • Low D & B6, but normal B12 - common in celiac disease; I even had high B12 so I know not everyone is low in B12
  • stomach aches especially after eating - oh yeah, celiac disease. Hypothyroidism slows the metabolism right down and causes problems too
  • everyday heartburn- reflux/ GERD is common in celiac disease
  • excess mucus in my throat (worse after eating) - don't know about this one...
  • petechaie - can occur in celiac disease if have low potassium (K); also found in those with thrombocytopenia (ITP)
  • dry skin and scalp - very common in hypothyroidism, also includes hair thinning
  • 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
  • anxiety, starting to feel depressed - common in both hypothyroidism and celiac disease
  • peripheral neuropathy -  yep. celiac disease and hypo
  • feeling of fullness after eating small amounts - yep for both again
  • hot flashes/feeling like I will faint - common when thyroid is switching between hyper and hypo; celiac disease also often involves low blood pressure which can cause that
  • aches and pains all over - yep for celiac disease and thyroiditis
  • tingling face/mouth/fingers - some get in celiac disease

 

I think you should get a full celiac panel:

  • tTG IgA and IgG
  • DGP IgA and IgG
  • EMA IgA
  • total serum IgA (a control test)
  • AGA IgA and IgG

The first three tests look for indicators of damage to the small intestine and the last test looks at gliadin sensitivity. You must be eating gluten in the weeks prior to testing in order to have accurate results.

 

I think you should have your thyroid checked. TSH should be near a 1, free T4 and free T3 should be 50-75% of the normal reference range, TOP Ab should be low, and skip testing total T4 and T3 as those are pretty useless tests.

 

I think you should have your RBC's and platelets checked to see if either is low.

 

Perhaps check your potassium levels. Other nutrients that are often low in celiac disease are iron, ferritin, B's, D's, calcium, and zinc.

 

If you have positive celiac tests, or a positive response to the gluten-free diet (after testing), then you should get your son checked too. celiac disease is genetic and does not always present with symptoms.

 

Good luck. Feel free to ask more questions and look around. There are some really knowledgeable people around here.  :)


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Nicole Posted Image

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#3 GottaSki

 
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Posted 03 August 2013 - 10:20 AM

Welcome Robin!

 

Nicole has provided excellent advice.

 

I want to stress...do have the tests done before removing gluten.  It can take quite a while to heal from undiagnosed Celiac Disease and it is not easy to remove ALL gluten from one's life.  If you skip the tests you may be left with more questions and uncertainty which can cause more problems down the road.

 

If you read through some of the active threads...you will find several folks that were told to "try" removing gluten before tests were run that are currently experiencing the frustration that comes from skipping testing.

 

Hang in there - read all you can :)

 

Edited to add...if you aren't sure how to find current threads...click the "View New Content" button in the option line directly under the header/top of the page.


Edited by GottaSki, 03 August 2013 - 10:23 AM.

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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 Jake'sMom87

 
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Posted 03 August 2013 - 02:45 PM

Thank you both for your answers! I will get the testing done! I have thought that I have hypothyroid, and my doc actually had tested my TSH 3 times in the past 2 years and it went from 2.6 the first time and the last test which was a few months ago it was 4.96. The last time it was tested they also tested free T4 which I don't remember what is was but I will check. They called me to say the test results were normal. The high range for TSH that they use is a 5. So even though I fell within normal range it obvious that my TSH is rising. I had to push for them to test the T4 & T3 and even at that they only tested the T4. Is there some kind of doctor you would recommend I see? I have tried 4 GPs and none of them take me seriously. I'm getting worse and I can't go on like this anymore.

As far as my son he doesn't seem to have many issues that I can think celiac would be a problem. The only thing is that he had terrible eczema when he was born that didn't clear up until he was 6 months. He has lots of gas though and his stools are frequently runny and a yellowish/green color. He still has some spots of dry skin on his torso and his upper arms for which I have tried every cream, even a prescription from his doctor. Lately he has been complaining of belly aches too which makes me wonder if that is a new thing or if he complains now that he can actually talk to me. Wow...I guess he does have some signs of it. But he also had reflux when he was a baby.

I haven't even tried going gluten free because it seems like so much work for something that I probably don't have. But I will definitely look into getting the testing done, I just need to know who I should see. My doctor will probably look at me like I'm crazy.

Thanks again!
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#5 whitepine

 
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Posted 03 August 2013 - 03:31 PM

Hi there,

 

It may seem like it's a lot of work in the beginning but most people notice after a week or two that their symptoms improve. Sometimes it can even be within days, some symptoms will improve. I noticed after a week when I first started the diet that my stool was better, I didn't have a lot of abdominal pain and I was less nauseated.

Defiantly get the test done before you start the diet especially if you are being tested through blood. I've read that people have gone on the diet then have had to go back to gluten which made them really sick again to result in a negative blood test. You can still be sensitive to gluten and not have celiac, sensitivity can range from mild to severe. Sometimes people are just allergic to certain grains like wheat. It's really all about removing things one after another. I removed wheat from my diet first with no change in symptoms to completely removing gluten from my diet and then corn


 


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#6 w8in4dave

 
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Posted 03 August 2013 - 05:46 PM

Wow!! you have so many symptoms I have had , amazing!! I would stay on the Gluten and get the test!! Good luck!! 


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DX'd June 17th 2013


#7 sliebman

 
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Posted 04 August 2013 - 03:53 PM

Definitely get the test, I got tested, but my doc only did the 1st 2 tests, which both came back negative.  I have already started the gluten free diet, and am feeling absolutely wonderful (I guess what most people would think of as normal), but I wish I had been on here first, and known to ask my doc for the full panel, now I don't know if its actually celiac, or just a sensitivity.  I know for sure it is a problem with gluten, as I just got gluttened a few days ago, (without knowing it) and knew right away the next morning exactly what it was.  Sure enough, I found out the marinade for some fish I had had, had soy sauce in it. 

And I do not want to do a gluten challenge to get an official diagnosis, at least not yet, I feel to good to go back now:(


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#8 Jake'sMom87

 
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Posted 12 August 2013 - 10:01 AM

Okay so I was able to access my most recent thyroid results.  My TSH was 4.96 and my free T4 was 1.26 with a referrence range of 0.8-1.8.  That is all that was checked.  I really think I may have a thyroid problem, but my biggest concern recently is that I feel like I'm going to pass out.  It can happen when I'm rest but is more likely to happen when I'm up and moving. 

 

I have a friend who is a nurse and her doctor does celiac testing so I am trying to get an appointment with them in the near future. 

 

Thank you all for your replies, it's nice to be able to talk to people who take you seriously.

 

Thanks again,

 

Robin


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#9 0range

 
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Posted 12 August 2013 - 04:09 PM

Okay so I was able to access my most recent thyroid results.  My TSH was 4.96 and my free T4 was 1.26 with a referrence range of 0.8-1.8.  That is all that was checked.  I really think I may have a thyroid problem, but my biggest concern recently is that I feel like I'm going to pass out.  It can happen when I'm rest but is more likely to happen when I'm up and moving. 

 

I have a friend who is a nurse and her doctor does celiac testing so I am trying to get an appointment with them in the near future. 

 

Thank you all for your replies, it's nice to be able to talk to people who take you seriously.

 

Thanks again,

 

Robin

 

Get your thyroid antibodies checked. Although old lab ranges say a TSH of upto 5 is fine, newer ranges say anything above a 3 is getting iffy. Did they not check Free T3? That's the more potent thyroid hormone. I have a friend who has elevated thyroid antibodies, high FT4 (i.e. mid to upper end of the range) but very low FT3. She has classic hypo symptoms even though everything "looks normal". Why do you feel like you're going to pass out? Do you get any alarming symptoms that incite this feeling? 

 

p.s. I have a lot of your symptoms! have not a nutritional deficiency test done (I'm only 23, so doctors don't routinely check) but my ferritin is always measly low. Was 9 a few months ago but have been taking copious amounts of supplements. It is currently 13 out of a 10 - 291 range. I will be getting a celiac blood panel done this month, but honestly, it is so hard to tell what is thyroid-related and what is due to another autoimmune problem such as celiac, as nvsmom pointed out. If I could wager a guess I would say that you do have an autoimmune problem going on and would encourage testing for thyroid antibodies as well as the whole celiac panel.


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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


#10 Jake'sMom87

 
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Posted 12 August 2013 - 07:17 PM

Thanks for the advice I will see if I can get those checked, but do I just ask my regular doctor or is there someone else I should see?

When I get the pass out feeling it starts by getting sweaty and then I just feel weak all over and it is sometimes accompanied by the feeling like I have to go to the bathroom. A lot like a panic attack although it's not because I have had those and it's not the same. So then I just feel like my whole body is jello and I turn pale. Even my boyfriend asks me are you okay. It tends to happen to me when I'm in a public place usually so maybe it is anxiety or something but it doesn't feel like it.

Besides that I get daily headaches which happen off and on throughout the day so I'm going to start timing them and see if there is a correlation between them and when I eat something.

Thanks for your response. When are you getting tested?
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#11 nvsmom

 
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Posted 13 August 2013 - 06:16 PM

Okay so I was able to access my most recent thyroid results.  My TSH was 4.96 and my free T4 was 1.26 with a referrence range of 0.8-1.8.  That is all that was checked.  I really think I may have a thyroid problem, but my biggest concern recently is that I feel like I'm going to pass out.  It can happen when I'm rest but is more likely to happen when I'm up and moving. 

 

I have a friend who is a nurse and her doctor does celiac testing so I am trying to get an appointment with them in the near future. 

 

Thank you all for your replies, it's nice to be able to talk to people who take you seriously.

 

Thanks again,

 

Robin

 

Oh yeah, you are  looking hypo with those numbers. TSH is high (doctyors might argue with me on that) and your Free T4 is in the bottom half of the range.  When my numbers were like that I felt quite hypo, and my free T3 was  quite low. I agree with Orange that you should ask for TPO Ab and free T3. Free T3 should be in the upper half of the normal range.  If TPO Ab is low, don't discount it; my TPO Ab has never been abnormal but I am still on a full replacement dose of natural dessiccated thyroid.

 

Your panic attack feeling is a hyper symptom (I believe) so your thyroid could be causing you to swing both ways - it's not uncommon. Definitely mention your symptoms to the doctor.

 

Good luck with your testing.


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"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#12 0range

 
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Posted 13 August 2013 - 08:27 PM

Thanks for the advice I will see if I can get those checked, but do I just ask my regular doctor or is there someone else I should see?

When I get the pass out feeling it starts by getting sweaty and then I just feel weak all over and it is sometimes accompanied by the feeling like I have to go to the bathroom. A lot like a panic attack although it's not because I have had those and it's not the same. So then I just feel like my whole body is jello and I turn pale. Even my boyfriend asks me are you okay. It tends to happen to me when I'm in a public place usually so maybe it is anxiety or something but it doesn't feel like it.

Besides that I get daily headaches which happen off and on throughout the day so I'm going to start timing them and see if there is a correlation between them and when I eat something.

Thanks for your response. When are you getting tested?

 

If your regular doctor is not compliant with testing, ask to see an endocrinologist (who typically is more well-versed in thyroid disorders).

 

I feel for you :( I have had low-grade anxiety all my life (phobia's mostly, and a nervous stomach) but thyroid-induced anxiety is a whole new ball game. The first time I had a panic attack due to my medication dose being too high (i.e. medication-induced hyperthyroidism) I rushed to the hospital because I thought my body was shutting down. I had no idea that anxiety could be so debilitating, and so scary, if that is in fact what it was. I know anxiety in and out, but this was nowhere near to what my body has ever been prepared for. Anxiety could be one reason to explain your symptoms but I truly feel it is a reaction to something that is going wrong in your body. Do you feel brain fog and have blurry vision mainly at night? This used to be one of my symptoms when I was severely overmedicated on thyroid medication. I still have intense brain fog, but it happens to 'hit' in the evening. 

 

I'll be testing for celiac, along with my dad (who has Hashimoto's and accompanying gut problems), at some point next week. Keep us posted and I hope you get some answers 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


#13 Juliebove

 
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Posted 13 August 2013 - 10:17 PM

I had a lot of those symptoms.  Mine began after having the baby.  A year after I had her, I learned that I had type 2 diabetes and nerve damage because of it to my feet, legs and stomach.  The stomach part (gastroparesis) also caused the GERD.  I had developed a thyroid problem while pregnant and I was being massively overdosed on my thryoid med by what I think was a bad Dr.  When it was brought to his attention he said that he wanted to keep me that way as I was overweight.  Well, it doesn't work that way.  If your regular Dr. can't sort this out, you might try an Endocrinologist.


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#14 Jake'sMom87

 
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Posted 14 August 2013 - 08:49 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


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#15 0range

 
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Posted 17 August 2013 - 10:52 PM

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

 

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.


  • 0

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






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