Possible Celiac?

[VictoriaSmith]

My symptoms started February of this year. They have progressively gotten worse. 

I currently experience: 

• Tingling from my shins down, back of my head/face, and forearms. My hands and feet stay ice cold. 

• The 3 middle toes on my left foot go numb, though I eventually gain feeling back. Comes and goes 

• D (consistently since March)

• Pain back of neck, headaches, joint pain, abdominal pain, etc. I do have psoriatic arthritis, but the pain has been at its worst since March. 

• I feel jittery, shaky. Sometimes I'm off-balanced, depth perception is off, floaty like I'm not really all there. I have trouble forming my words, I stutter or slur. 

• I have hot flashes a flush alot. I'm sweating more during day and night. I experience heart palpitations with these feelings as well. 

• I'm legally blind in my left eye, but my double vision has progressively gotten worse the last couple of months. 

I've had my thyroid checked and everything was normal there. Basic metabolic blood panel came back normal. My doctor refuses to do any testing on celiac even though I have asked. She just wants me to go gluten free for a week, and dairy free for a week. "That will inform her better than some fancy test." Currently waiting on labs for auto immune, inflammation, etc. I do have psoriasis and psoriatic arthritis, but she's also wanting to test me for RA and other autoimmune diseases. Also want to put me on a heart monitor for a week at the end of the month. It's just been beyond frustrating. 

[trents]

Two things:

1. Get a different doctor who will listen to you. There is also the option of purchasing a home test for celiac disease for about $100. Imaware is one company that sells these.

2. Don't try to go gluten free until all testing is complete. You will invalidate the testing if you do. The tests will throw negatives for celiac disease and you will be stuck in a quandary not knowing if you have celiac disease but suspecting that gluten makes you ill.

You have many symptoms of either celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS but celiac disease must first be ruled out.

[VictoriaSmith]

I agree with finding another doctor. My first clue should have been when she referred to it as an allergy. 

She seems to want to go the route of narrowing everything else possible out first. Even wanting to prescribe medications for my psoriasis, that I just refuse to take with the many many side effects they have. 

[trents]

Unfortunately, there still is an appalling lack of awareness in the medical community concerning gluten-related diseases. It's slowly getting better, however. Sometimes you have go to appointments armed with information, being prepared to be appropriately assertive and take them by the hand.

Edited May 23, 2022 by trents

[Wheatwacked]

Although it seems odd that she would do tests for everything but Celiac Disease, your doctor is not ignoring Celiac Disease. She's cutting to the chase. Testing will not identify Non Celiac gluten sensitivity NCGS (10% of the population) and may or may not identify Celiac (1% of the population). If you improve with GFD I expect she would then have you restart gluten and test for Celiac then.  Find out what improves with GFD then go after the other things. I've been gluten free since Thanksgiving 2014 and have recently started the same problems with my vision, so I agree with her to look for other possibilities. Celiac Disease and NCGS are all about nutritional deficiencies, but so is SIBO, H. Pylori, and the Standard American Diet.

Regarding your symptoms: 

For the neuropathy, tingling, maybe even the spacey stuff, it could be Thiamine Deficiency. To test for Thiamine Deficiency the World Health Organization recommends a trial B1 supplement to see if it helps. I ended up increasing to 2000 mg a day The Missing Link to Thyroid Fatigue and finally my peripheral neuropathy has responded after two weeks. The back pains will improve with GFD over time.

You may also not be getting enough Choline, Iodine, vitamin D, the B vitamins as a group. They can also cause similar symptoms. 

 

 

[trents]

But a week of gluten free eating is probably not going to be long enough to tell much. And so many of OP's symptoms point to a gluten disorder. Since you got to start somewhere in your testing, it just seems smart to go with something that is easily testable and matches so many of her symptoms. And like OP said, it is concerning that the physician would reference celiac disease as an allergy.

[Wheatwacked]

I like that the doctor is acknowledging celiac disease while looking for other issues. I think like you that most will resolve on GFD and the right nutrients, but once an official diagnosis is given the insurance will restrict any other testing.

[Kate333]

I agree with Trents.  There is no valid reason to refuse a request for a simple, inexpensive gluten antibody blood test (TTG/IgA).  She should have also referred you for a GI consultation, given your chronic D since February.  I could be celiac disease or a zillion other things, but a responsible, caring doctor would be eager for definite answers, not just tell patients to "go gluten-free and see what happens," thus prolonging your frustration and worry.  Also, if you have celiac disease and don't know it, you might be inclined to just reduce (but not eliminate all) gluten once you noticed even some improvement, but of course the gut damage would continue.  IMO, that false sense of security is dangerous.   If you do have celiac disease, you might request a vitamin/mineral blood test to assess whether (or not) you need supplements.  

[C4Celiac]

I'm a better Dr than your Dr and I'm not even a Dr

[VictoriaSmith]

  On 5/23/2022 at 8:40 PM, Wheatwacked said:

Although it seems odd that she would do tests for everything but Celiac Disease, your doctor is not ignoring Celiac Disease. She's cutting to the chase. Testing will not identify Non Celiac gluten sensitivity NCGS (10% of the population) and may or may not identify Celiac (1% of the population). If you improve with GFD I expect she would then have you restart gluten and test for Celiac then.  Find out what improves with GFD then go after the other things. I've been gluten free since Thanksgiving 2014 and have recently started the same problems with my vision, so I agree with her to look for other possibilities. Celiac Disease and NCGS are all about nutritional deficiencies, but so is SIBO, H. Pylori, and the Standard American Diet.

Regarding your symptoms: 

For the neuropathy, tingling, maybe even the spacey stuff, it could be Thiamine Deficiency. To test for Thiamine Deficiency the World Health Organization recommends a trial B1 supplement to see if it helps. I ended up increasing to 2000 mg a day The Missing Link to Thyroid Fatigue and finally my peripheral neuropathy has responded after two weeks. The back pains will improve with GFD over time.

You may also not be getting enough Choline, Iodine, vitamin D, the B vitamins as a group. They can also cause similar symptoms. 

 

 

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To me, it seemed she's ignoring it as a possibility. When we were discussing the labs and when they'll be back, she told me she disagrees celiac is a possibility. 

She thinks my heart palpitations are cardiovascular (which they might be, heart disease does strongly run in the family) and everything else is probably hormonal. 

 

I'll definitely try the Thiamine. The current supplements I take are Vitamin D, B12 and C. The Vitamin D was greatly helping with my psoriasis, but unfortunately it's all flared back up in March. More than likely due to the stress of everything else.

[VictoriaSmith]

  On 5/23/2022 at 11:00 PM, Kate333 said:

I agree with Trents.  There is no valid reason to refuse a request for a simple, inexpensive gluten antibody blood test (TTG/IgA).  She should have also referred you for a GI consultation, given your chronic D since February.  I could be celiac disease or a zillion other things, but a responsible, caring doctor would be eager for definite answers, not just tell patients to "go gluten-free and see what happens," thus prolonging your frustration and worry.  Also, if you have celiac disease and don't know it, you might be inclined to just reduce (but not eliminate all) gluten once you noticed even some improvement, but of course the gut damage would continue.  IMO, that false sense of security is dangerous.   If you do have celiac disease, you might request a vitamin/mineral blood test to assess whether (or not) you need supplements.  

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I thought it was strange she wanted to run labs for everything else, but not celiac as well. She seems to be focusing on other auto immune diseases, mainly psoriasis, psoriatic arthritis and rheumatoid arthritis. I have the first 2, so wouldn't it be kinda redundant to test for the last?  She's also very intrigued that Lupus runs in my family as well. I've never exhibited symptoms for it. She also said we'd look into the reasoning of my D another time. 

My Thyroid levels checked out fine in March when I initially went to the ER for my health, but was told my levels could be fluctuating. The original diagnosis was possible undiagnosed heart disease, arthritis and unknown on everything else. 

They all seem to be very stumped on my symptoms as a whole. 

I definitely will ask about a mineral/vitamin test. They did note I was fine in my iron when I had the BMP, which honestly was a shock for me. I've been anemic for as long as I can remember. Of course I have been taking Vitamin C the last 3 years, which helps absorb Iron better so I assume that's why. 

[VictoriaSmith]

  On 5/24/2022 at 8:40 AM, C4Celiac said:

I'm a better Dr than your Dr and I'm not even a Dr

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She looked at me like I had multiple heads when I asked about celiac. She asked me if I "ate alot of bread" I told her, well yeah I eat alot of things that have gluten in it, not just bread. 

She said, no it's usually bread that's the main source of the gluten allergy. Then told me to not eat it for a week, then not eat dairy for the next. 

When I politely told her it wasn't just bread and its an auto immune disease, not an allergy, that's when the other tests were ordered and the visit pretty much ended. She doesnt think it's a factor, it's more likely arthritis, heart and hormones. 

I honestly feel like she's just wanting to focus on the diagnosis I already have and the ones the ER gave just because they had nothing else to put down. I'm all for having my heart checked, but I'm not going on Methotrexate for my psoriatic arthritis. Meds for psoriasis and psoriatic arthritis have too many negative side effects. 

[C4Celiac]

  On 5/23/2022 at 7:22 PM, VictoriaSmith said:

 

• I feel jittery, shaky. Sometimes I'm off-balanced, depth perception is off, floaty like I'm not really all there. I have trouble forming my words, I stutter or slur. 

 

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that was my symptoms..  sill have a bit of dizziness and shakiness.. but its getting better    

[VictoriaSmith]

  On 5/24/2022 at 4:21 PM, C4Celiac said:

 

that was my symptoms..  sill have a bit of dizziness and shakiness.. but its getting better    

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It makes me relieved to hear symptoms start improving. I'm ready to feel like myself again. Not like a zombie walking through life.

I'm going to keep eating at least a cracker or two a day until I can get a test done. Going to try a different doctor next week to see if they'll do the test. If not I'll just order one. 

Last night while I was sitting on the couch I kept experiencing some very scary vertigo. Like the whole house was tilting forward on me. Today so far the off balanced and tingling feeling is more pronounced. Eyes feel numb. Exhausted even though I slept for 10 hours. 

[trents]

Mayon

  On 5/24/2022 at 5:25 PM, VictoriaSmith said:

It makes me relieved to hear symptoms start improving. I'm ready to feel like myself again. Not like a zombie walking through life.

I'm going to keep eating at least a cracker or two a day until I can get a test done. Going to try a different doctor next week to see if they'll do the test. If not I'll just order one. 

Last night while I was sitting on the couch I kept experiencing some very scary vertigo. Like the whole house was tilting forward on me. Today so far the off balanced and tingling feeling is more pronounced. Eyes feel numb. Exhausted even though I slept for 10 hours. 

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Mayo clinic recommendations are two slices of wheat bread or the equivalent daily for 6-8 weeks leading up to the antibody testing. Not sure that two crackers will suffice.

[VictoriaSmith]

  On 5/24/2022 at 5:41 PM, trents said:

Mayon

Mayo clinic recommendations are two slices of wheat bread or the equivalent daily for 6-8 weeks leading up to the antibody testing. Not sure that two crackers will suffice.

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I will try that then. Thank you.

I'm not too familiar on the amounts of gluten in products yet. I have noticed how tricky its going to be to go gluten free though. I can see why it's so lacking in awareness in community as a whole. Most don't think twice about things like that til they're faced with the possibility themselves unfortunately. 

[trents]

  On 5/24/2022 at 6:30 PM, VictoriaSmith said:

I will try that then. Thank you.

I'm not too familiar on the amounts of gluten in products yet. I have noticed how tricky its going to be to go gluten free though. I can see why it's so lacking in awareness in community as a whole. Most don't think twice about things like that til they're faced with the possibility themselves unfortunately. 

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How true. And it shows up in food you would never expect to find it. Like canned tomato soup and soy sauce.

[VictoriaSmith]

  On 5/24/2022 at 6:42 PM, trents said:

How true. And it shows up in food you would never expect to find it. Like canned tomato soup and soy sauce.

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Good thing I avoid soy sauce anyways! What surprised me is all the ways cross contamination can occur. Separate dishes/utensils, even separate sponges for washing dishes! That one will be tricky as my husband doesn't have Celiac.

He's a type 1 diabetic though. I remember reading somewhere but don't recall where, that other auto immune diseases increase your chances of developing Celiac correct? 

[trents]

  On 5/24/2022 at 7:37 PM, VictoriaSmith said:

Good thing I avoid soy sauce anyways! What surprised me is all the ways cross contamination can occur. Separate dishes/utensils, even separate sponges for washing dishes! That one will be tricky as my husband doesn't have Celiac.

He's a type 1 diabetic though. I remember reading somewhere but don't recall where, that other auto immune diseases increase your chances of developing Celiac correct? 

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Well, it's sort of a chicken or the egg question. But we can say that those with celiac disease are more likely to have or to develop other autoimmune diseases than is the general population.

[KittenPA]

  On 5/24/2022 at 11:38 AM, VictoriaSmith said:

I definitely will ask about a mineral/vitamin test. They did note I was fine in my iron when I had the BMP, which honestly was a shock for me. I've been anemic for as long as I can remember. Of course I have been taking Vitamin C the last 3 years, which helps absorb Iron better so I assume that's why. 

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Make sure your Ferritin levels are being tested when you're getting the iron panel.  While your iron may be in the correct range, your ferritin levels can cause a surprising number of symptoms.  My iron and TIBC panel actually came back normal with my last round of labs, but my ferritin is in the toilet.

Do you have a root cause for your anemia, or were you just told to take iron supplements and that was the end of it?

[VictoriaSmith]

  On 5/24/2022 at 10:52 PM, KittenPA said:

Make sure your Ferritin levels are being tested when you're getting the iron panel.  While your iron may be in the correct range, your ferritin levels can cause a surprising number of symptoms.  My iron and TIBC panel actually came back normal with my last round of labs, but my ferritin is in the toilet.

Do you have a root cause for your anemia, or were you just told to take iron supplements and that was the end of it?

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I'm not sure I have ever heard of Ferritin. 

No, I never was told the cause for my anemia. 

[KittenPA]

  On 5/24/2022 at 11:11 PM, VictoriaSmith said:

I'm not sure I have ever heard of Ferritin. 

No, I never was told the cause for my anemia. 

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Please ask for a full iron panel to be run the next time you get labs, including your ferritin. 

It is really important to understand the root cause of your anemia.  That's how I've ended up down this path - my GP sent me to a GI to rule out internal bleeding, celiac, etc as the reason for my deficiency.  (My GI would now like me to go and see a hematologist for B12 injections because it's bordering on deficient, but if my GI doesn't diagnose me with a cause of the anemia, I was going there anyway.)  I am hopeful that if celiac is the reason for my anemia that I can correct it through diet and get off of supplements.

[trents]

  On 5/24/2022 at 11:11 PM, VictoriaSmith said:

I'm not sure I have ever heard of Ferritin. 

No, I never was told the cause for my anemia. 

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Ferritin is a storage protein I believe. Hemoglobin numbers speak to the "now" amount of iron in the blood where as ferritin numbers address the amount in reserve.

There is a type of anemia called "pernicious anemia" that is caused by the inability of the gut to assimilate B12, a B vitamin necessary in the formation of hemoglobin. 

[VictoriaSmith]

  On 5/24/2022 at 11:25 PM, KittenPA said:

Please ask for a full iron panel to be run the next time you get labs, including your ferritin. 

It is really important to understand the root cause of your anemia.  That's how I've ended up down this path - my GP sent me to a GI to rule out internal bleeding, celiac, etc as the reason for my deficiency.  (My GI would now like me to go and see a hematologist for B12 injections because it's bordering on deficient, but if my GI doesn't diagnose me with a cause of the anemia, I was going there anyway.)  I am hopeful that if celiac is the reason for my anemia that I can correct it through diet and get off of supplements.

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I will, thank you! 

Now that makes me wonder if I've had signs/symptoms of celiac before I started the more pronounced ones the last few months. 

I was severely anemic when I was pregnant 2008. I stayed sick (not just the normal bout of morning sickness.) and would pass out randomly.

Digestive issues started in 2011 (gallbladder removed the same year) but still would have bouts of D after first thing I ate everyday after the surgery. That's remained til recently, now I have it no matter when I eat. 

[knitty kitty]

@VictoriaSmith and all,

I've experienced Gastrointestinal Beriberi and Wernicke's Encephalopathy due to Thiamine deficiency.  The symptoms I've had and the symptoms you are describing sound very similar.  See for yourselves.  Here are some scientific studies done on Thiamine deficiency.

Starvation-induced diplopia and weakness: a case of beriberi and Wernicke’s encephalopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6326289/

And...

Gastrointestinal beriberi: a forme fruste of Wernicke's encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

And...about niacin deficiency...because you're probably deficient in more than one vitamin or mineral with Celiac Disease malabsorption....

https://www.ncbi.nlm.nih.gov/books/NBK557728/