Newly Diagnosed

[NCalvo822]

Hi Everyone,

 

I’ve just been diagnosed with celiac disease, almost by accident. I went to find out if I have ataxia, as that is something my mother has. I believe my sister does too, though she hasn’t been diagnosed with ataxia. Anyway, lab tests showed I do not have ataxia, but I do have celiac disease. I have to admit, I was totally blindsided. I’ve never had any symptoms whatsoever. I am 58 years old and struggling to understand. My PCP did not put me on a strict gluten-free diet as I expected she would. Instead, she just said to continue as I have until now, since I have no symptoms. This doesn’t sound right to me. If you’re an asymptomatic celiac disease patient like me, I’d love to hear from you.

 

 

[Scott Adams]

It’s completely understandable to feel blindsided by a celiac disease diagnosis, especially when you’ve never experienced any noticeable symptoms. Many people assume that celiac disease always comes with obvious digestive distress, but in reality, some people—like you—are asymptomatic, or what’s sometimes called “silent celiac.” Even without symptoms, the disease can still cause internal damage to your small intestine and increase your risk for serious complications like osteoporosis, infertility, certain cancers, and neurological issues, including ataxia. That’s why treatment—a strict lifelong gluten-free diet—is recommended for all individuals diagnosed with celiac disease, not just those who feel sick. It’s surprising that your PCP advised you to continue eating gluten, as this contradicts current clinical guidelines. You may want to seek a second opinion from a gastroenterologist or a dietitian who specializes in celiac disease. Even without symptoms, going gluten-free is the best way to protect your long-term health and prevent complications.

Your first degree relatives should also be screened for celiac disease.

You’re definitely not alone—many in the celiac community have been in your shoes and can offer support as you begin this unexpected journey.

 

[trents]

Welcome to the forum, @NCalvo822! Ditto to what Scott said. But let me ask you, what method or methods did your physician use to diagnose you as having celiac disease? Normally, it is a two step process. The first step involves a blood test that looks for certain antibodies produced by celiac disease. The second step involves an upper GI scoping and biopsy of the small bowel lining to check for the damage to the lining typically caused by celiac disease. This second step is used as confirmation of the blood work when the antibody testing turns up some positives. Occasionally, positive antibody tests scores can be caused by things besides celiac disease. Which of these were done or did you have both done before the doc declared you to have celiac disease?

Edited July 25, 2025 by trents

[knitty kitty]

Hello, @NCalvo822,

Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease.

Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease. 

First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!  

Definitely a good idea to keep to a gluten free diet.  

Edited July 27, 2025 by knitty kitty
Typo correction

[DebJ14]

Personally, I would get a new GP.  Advice to continue eating gluten, even after a Celiac disgnosis, is ridiculous.  Clearly the GP knows nothing about the disease.  That advice could be dangerous to your health.  I too found out by accident.  I was searching for help with ulnar neuropathy.  The first doctor took xrays of my elbow and hand.  Surprise, surprise nothing wrong!  The second doctor took xrays of my neck, but also took a detailed history and gave a complete physical exam. He noted the dermatitis herpetiformis rash, the inability to walk a straight line, the previous miscarriages, history of "irritable bowel" and of course the migraines since childhood.  Blood was immediately drawn and a skin biopsy taken and genetic tests done.  When all 3 were positive, I was given the opportunity to opt out of the endoscopy, which I did due to a history of adverse reactions to sedation.  Oh, and the ulnar neuropathy turned out to be bone spurs at C 6 and C7 pushing on the nerve root.  6 weeks of chiropractic care took care of that and a gluten-free diet took care of the rest.

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[NCalvo822]

On 7/24/2025 at 11:44 PM, trents said:

Welcome to the forum, @NCalvo822! Ditto to what Scott said. But let me ask you, what method or methods did your physician use to diagnose you as having celiac disease? Normally, it is a two step process. The first step involves a blood test that looks for certain antibodies produced by celiac disease. The second step involves an upper GI scoping and biopsy of the small bowel lining to check for the damage to the lining typically caused by celiac disease. This second step is used as confirmation of the blood work when the antibody testing turns up some positives. Occasionally, positive antibody tests scores can be caused by things besides celiac disease. Which of these were done or did you have both done before the doc declared you to have celiac disease?

Hi! I went to the university here where they have the top doctors. They sent me for an intensive round of lab tests. Once celiac disease turned up, they sent for further lab tests to confirm it. Everything came back positive. The scoping and biopsy I have not had done yet. I thought my PCP was going to refer me to a GI dr to have it done but it didn’t happen. Which is why I came on here seeking advice.

[NCalvo822]

5 hours ago, DebJ14 said:

Personally, I would get a new GP.  Advice to continue eating gluten, even after a Celiac disgnosis, is ridiculous.  Clearly the GP knows nothing about the disease.  That advice could be dangerous to your health.  I too found out by accident.  I was searching for help with ulnar neuropathy.  The first doctor took xrays of my elbow and hand.  Surprise, surprise nothing wrong!  The second doctor took xrays of my neck, but also took a detailed history and gave a complete physical exam. He noted the dermatitis herpetiformis rash, the inability to walk a straight line, the previous miscarriages, history of "irritable bowel" and of course the migraines since childhood.  Blood was immediately drawn and a skin biopsy taken and genetic tests done.  When all 3 were positive, I was given the opportunity to opt out of the endoscopy, which I did due to a history of adverse reactions to sedation.  Oh, and the ulnar neuropathy turned out to be bone spurs at C 6 and C7 pushing on the nerve root.  6 weeks of chiropractic care took care of that and a gluten-free diet took care of the rest.

Hi! Your history is interesting as I see parallels with my history. I too had migraines since childhood, but they run in my family so I didn’t think there could be any connection to the celiac. Also, the migraines have tapered off after menopause. I too have trouble walking in a straight line. And yet another similarity is I have been seeing both a dermatologist and an allergist for many years. The allergist has run many tests for my skin issues, but concluded I am not allergic to anything. I do occasionally get hives and am on daily medication to control the hives and other rashes or similar issues. At my last appt with allergist recently, I informed them of my new diagnosis of celiac disease. They said that it has nothing to do with my skin issues. They didn’t even put it in my chart. I know because I read the notes from the visit on the patient portal. However, your post has me second guessing my skin issues and possible connection to celiac disease.

[Scott Adams]

It's possible that your doctor wants you to do an endoscopy to confirm the diagnosis, and if that is the case that could be why they don't want you to go gluten-free before that procedure is done. 

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[NCalvo822]

On 7/27/2025 at 7:34 AM, knitty kitty said:

Hello, @NCalvo822,

Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease.

Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease. 

First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!  

Definitely a good idea to keep to a gluten free diet.  

Definitely useful info. Thank you!

[trents]

Scott Adams makes an excellent point about the possible pending scope with biopsy being the reason you were advised to keep eating gluten, @NCalvo822! You might want to get some clarification about that. What you don't want to happen is to go gluten free and then have to go back on gluten at some point in order to produce valid scoping/biopsy results.

[DebJ14]

1 hour ago, NCalvo822 said:

Hi! Your history is interesting as I see parallels with my history. I too had migraines since childhood, but they run in my family so I didn’t think there could be any connection to the celiac. Also, the migraines have tapered off after menopause. I too have trouble walking in a straight line. And yet another similarity is I have been seeing both a dermatologist and an allergist for many years. The allergist has run many tests for my skin issues, but concluded I am not allergic to anything. I do occasionally get hives and am on daily medication to control the hives and other rashes or similar issues. At my last appt with allergist recently, I informed them of my new diagnosis of celiac disease. They said that it has nothing to do with my skin issues. They didn’t even put it in my chart. I know because I read the notes from the visit on the patient portal. However, your post has me second guessing my skin issues and possible connection to celiac disease.

Migraines ran in my family, on my father's side.  All of my female first cousins on that side, and our grandmother suffered from Migraines.  Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007.  The dermatitis herpetiformis rash is a blistery, super itchy rash.  When they do the biopsy they take it from non-involved skin that is next to the rash.  If done wrong, the results may not be accurate.  Have you ever had one done?

1 hour ago, NCalvo822 said:

Hi! I went to the university here where they have the top doctors. They sent me for an intensive round of lab tests. Once celiac disease turned up, they sent for further lab tests to confirm it. Everything came back positive. The scoping and biopsy I have not had done yet. I thought my PCP was going to refer me to a GI dr to have it done but it didn’t happen. Which is why I came on here seeking advice.

In that case, I agree that maybe she has you still on gluten for a biopsy.  But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.

 

[knitty kitty]

Migraines can be caused by Thiamine deficiency.  Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long.  All the  B vitamins work together to make energy, ATP, which is used to fuel all the cell activity.  Without Thiamine, the energy production cycle doesn't even get started.  

There's studies done on mice showing thiamine deficiency affects the offspring of thiamine deficient mothers and fathers.  The offspring have fewer thiamine receptors and are prone to becoming thiamine insufficient quickly.  They have a higher metabolic need for thiamine.  Supplementing with extra thiamine helped them  tremendously.

Migraines have run in my family for several generations, too.  Once I started taking TTFD, a form of thiamine that can enter cells without using thiamine transporters, my migraines have vanished.  TTFD is tetrahydrofurfuryl disulfide. Benfotiamine is another form that can improve migraine frequency, too.

Thiamine is safe and nontoxic even in high doses.  There is no upper limit because thiamine has never caused a death even in high doses.  It is excreted via kidneys if not needed or not absorbed.

[NCalvo822]

6 hours ago, trents said:

Scott Adams makes an excellent point about the possible pending scope with biopsy being the reason you were advised to keep eating gluten, @NCalvo822! You might want to get some clarification about that. What you don't want to happen is to go gluten free and then have to go back on gluten at some point in order to produce valid scoping/biopsy results.

Thank you.  Very helpful.

[DebJ14]

15 hours ago, knitty kitty said:

Migraines can be caused by Thiamine deficiency.  Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long.  All the  B vitamins work together to make energy, ATP, which is used to fuel all the cell activity.  Without Thiamine, the energy production cycle doesn't even get started.  

There's studies done on mice showing thiamine deficiency affects the offspring of thiamine deficient mothers and fathers.  The offspring have fewer thiamine receptors and are prone to becoming thiamine insufficient quickly.  They have a higher metabolic need for thiamine.  Supplementing with extra thiamine helped them  tremendously.

Migraines have run in my family for several generations, too.  Once I started taking TTFD, a form of thiamine that can enter cells without using thiamine transporters, my migraines have vanished.  TTFD is tetrahydrofurfuryl disulfide. Benfotiamine is another form that can improve migraine frequency, too.

Thiamine is safe and nontoxic even in high doses.  There is no upper limit because thiamine has never caused a death even in high doses.  It is excreted via kidneys if not needed or not absorbed.

I was tested for nutrient deficiencies and Thiamine was not my problem.    The doctor uses the Spectracell Test for Micronutrient Deficiencies.  I was deficient in Carnitine, Magnesium, multiple antioxidants, D, Selenium, B12, B6 and a long list, just not Thiamine.  

[knitty kitty]

@DebJ14,

Yes, Celiac Disease causes malabsorption of all the essential vitamins and minerals, not just thiamine. 

All the B vitamins work together and many minerals are needed as well.  If one is missing, the rest can't work well without it.  Thiamine is used at the beginning of the energy production cycle and interacts with each of the other B vitamins in the process.  

Mitochondrial health depends upon thiamine.  Without thiamine, mitochondria can't produce energy, ATP, needed for cells to function.  They sicken and die.  Mitochondrial dysfunction is said to be the basis of illness. 

 

Interesting Reading:

Practical supplements for prevention and management of migraine attacks: a narrative review

https://pmc.ncbi.nlm.nih.gov/articles/PMC11557489/

The importance of thiamine (vitamin B1) in humans

https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/