Celiac Maybe a Possibility?

[More2Learn]

Hi,

I am new!  (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here.  I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy that needed an EpiPen, and I know that's not me.  However, I stumbled upon some symptoms, realized I was wrong, and after some research I'm almost shocked at what I have found.  It seems like anything I've ever struggled with has a potential correlation to this disease!  I'm in my 40's, now.  Here is my journey to date...

Issues as a Kid:

• tons of allergies, and had sinus infections all the time... however I didn't have hayfever-like allergies and the scratch tests didn't register much, it was more that when I was exposed to allergens (like say I spent hours with a cat) I was certain to get a sinus infection and it lasted months.
• was extremely skinny and everyone always said I was anorexic (I wasn't)
• always getting sick and the illnesses hang on for a long time
• always cold (my favorite thing to do is sit in front of a space heater or be out in 90 degree weather)
• intermittent bad constipation (still happens but not as severe)
• horrible toe cramps that would wake me up in the middle of the night

As I got older (teenage/college years):

• acid reflux diagnosis
• learned that beer made me EXTREMELY sick, cannot tolerate it
• horrible issues with menstrual cycle - I wasn't regular, had awful cramps and PMS, sometimes cannot function the first couple of days
• night terrors/sleep walking
• more stomach issues - I learned I couldn't have black coffee.  I often had issues especially when traveling.  For example I finally noticed a pattern that I could never, ever eat at a hotel buffet spread - it would always make me sick afterwards.

More recent problems:

• always tired
• periodic pain on right side that can be so painful I can't stand up straight. Have had all kinds of scans and doctors always say I'm fine.  I was so sure I had gallstones or my liver was failing but... nope.
• chest pain
• brain fog
• not diagnosed but many, many ADHD symptoms
• lots of inflammation, am overweight now
• toe cramps evolved into leg/calf cramps

None of my symptoms from any era of my life ever really resolved, except I went from being skinny to ~20/30 pounds overweight, and as I got older I got less outright sinus infections. 

Largely due to the pain in my right side and the fact that I always, always seem to pick up every illness, especially when traveling, I started pursuing alternative medicine paths... I did the Pritikin lifestyle, I tried an elimination diet, I followed the Root Cause Protocol, I did a Leptin reset.  A lot of these paths recommend removing gluten, and in the past year or so some of my symptoms have gone away!  Specifically less issues with toe cramps, sometimes the side pain would go away for a long time, and my acid reflux got much better.  But, because I was never diagnosed with any specific intolerance, I wasn't militant about the gluten - I had cut out dairy, soy, all kinds of things.  So I would say cross-contamination is ok, or make an exception at a group outing.

Then one day, I just got frustrated and ate some normal slices of pizza... and my side pain came back!  I started doing research and now I'm here and wondering... could I have actually had this my whole life??!?

Thoughts and observations welcome. 

 

 

 

 

 

[Scott Adams]

Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though they can overlap with other conditions as well. The recurring sinus infections, being underweight as a child, chronic gastrointestinal issues, nutrient-related symptoms like cramps, and the persistent fatigue and brain fog are all things that many people with undiagnosed celiac report.

Your reactions to gluten also stand out. The improvement in symptoms when you reduce or remove gluten, followed by the resurgence of pain and other problems when you reintroduce it, is a common experience for those with celiac or gluten intolerance. While your frustrations and trials with elimination diets might not have given you concrete answers yet, they’ve provided valuable clues.

It’s also worth noting that celiac disease doesn’t always present in the classic way. Many people, like yourself, may not experience severe gastrointestinal distress but instead have “atypical” or extraintestinal symptoms like joint pain, menstrual irregularities, fatigue, and more. It’s a condition that can go undiagnosed for years, especially when symptoms are subtle, sporadic, or mistakenly attributed to other issues. The fact that you’ve sought alternative approaches to feel better shows just how determined you’ve been to find relief, even without a definitive diagnosis.

Given your history and how your body responds to gluten, it would be worth exploring celiac disease further with a medical professional. Before removing gluten completely, it’s important to get tested while you’re still eating it, as going gluten-free beforehand can affect the accuracy of the results. A blood test for celiac antibodies (like tTG-IgA) is usually the first step, and if positive, an endoscopy may follow to confirm the diagnosis. If the testing process feels daunting, keep in mind that getting answers could give you clarity and help guide your health decisions going forward.

Whatever the outcome, you’ve already made significant strides in identifying triggers and managing your symptoms. Your awareness and persistence are key, and this community is here to support you as you continue to seek answers.

This article might be helpful. It breaks down each type of blood test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[Wheatwacked]

It seems you have proven that you cannot eat gluten.  You've done what your doctors have not been able to do in 40 years.

21 hours ago, More2Learn said:

seem to pick up every illness

That's your low vitamin D, a common symptom with Celiac Disease.  Zinc is also a common defiency.  Its an antiviral.  that's why zinc gluconate lozenges work against airborne viruses. 

Vitamin D and the Immune System+

Quote

 

Surge of information on benefits of vitamin D  

“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy, whose family practice is affiliated with The Memorial Hospital of Belleville, Ill.

“There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. Elevations in blood pressure now require many fewer medications,” he said.

 

Toe cramps, I find 250 mg of Thiamine helps.  

When I started GFD I counted 19 symptoms going back to childhood that improved with Gluten Free Diet and vitamin D.

I still take 10,000 IU a day to maintain 80 ng/ml and get it tested 4 times a year. Highest was 93 ng/ml and that was at end of summer.  Any excess is stored in fat or excreted through bile.  

The western diet is deficient in many nutrients including choline and iodine.  Thats why processed foods are fortified.  Celiac Disease causes malabsorption of vitamins and minerals from the small intestine damage.  GFD stops the damage, but you will still have symptoms of deficiency until you get your vitamins repleted to normal. 

Try to reduce your omega 6:3 ratio.  The Standard American Diet is 14:1 or greater.  Healthy is 3:1.  Wheat flour is 22:1.  Potatoes are 3:1 while sweet potatoes are 14:1.  So those sweet potatos that everyone says is better than Russet: they are increasing your inflammation levels. 

 

[trents]

Yes, get serum antibody testing done for celiac disease. You could also have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

[More2Learn]

These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters. 

I do think it would be a good idea to get the blood test.  Two questions:

1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step?

2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day?

Thanks again!

[trents]

Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start.

Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.

[More2Learn]

Thanks, yes, I've gone back and forth.  There is a lot of autoimmune disease in my family, so primarily I was thinking a real diagnosis might be helpful for other family members -- especially as I have two young biological nephews.  I feel like I am at a crossroads, where if I'm going to test now would be the time, since I've been in a less-than-perfect eating period.  I'm either going to just going to use what I've learned in these last few months to purposely never cheat again (obviously there is the accidental glutening situations) or test first, and then do that.  I don't need an official diagnosis so much that if I'm doing well I'm going to sabotage that by then starting to eat gluten again.

15 hours ago, trents said:

And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat.

I'm so glad you said this.  Even from what I've read so far, it makes sense to me that this is a misconception.  But growing up with all kinds of allergies, I can see how, as for the general population it's just easier for everyone to simplify it down to a type of "allergy," people would assume this.  It's just how most people look at allergies and diets and gluten avoidance has been painted as both.  I even see it in my journey to date, when I say I want a gluten free selection at a restaurant and I am asked "is it an allergy?" and it is so much easier just to say yes (even if the answer is actually well, no, it's autoimmune).  Because the "yes" answer is the "this is serious" answer.

[Wheatwacked]

15 hours ago, More2Learn said:

I am asked "is it an allergy?" and it is so much easier just to say yes

In that case if you answer "no" does that mean the chef doesn't have to be as diligent?  If you ask for "pork free" do they ask if it is an allergy too?

How's this for an answer: "I get violently sick if I eat wheat, barley or rye"?

[Scott Adams]

The only issue with that approach, is that some restaurants may not want to serve you--if you say you get violently ill, or have a deadly allergy, etc.--remember, at least here in California, businesses can decline to serve you.

[Wheatwacked]

Yeah, but that's probably not where you want to eat, anyway.

[Scott Adams]

Possibly, but there used to be a movement within the celiac disease community to just tell restaurants that you have a deadly wheat/gluten allergy to, hopefully anyway, ensure that your meal is actually gluten-free. I don't recommend this approach at all, and if I ran a restaurant where there was ANY risk of cross-contamination, I'm afraid that I would decline to server someone who made this claim. No restaurant owner wants anyone dying or going to the emergency room at their business.

[Aleda D]

On 11/23/2024 at 4:49 PM, Wheatwacked said:

It seems you have proven that you cannot eat gluten.  You've done what your doctors have not been able to do in 40 years.

That's your low vitamin D, a common symptom with Celiac Disease.  Zinc is also a common defiency.  Its an antiviral.  that's why zinc gluconate lozenges work against airborne viruses. 

Vitamin D and the Immune System+

Toe cramps, I find 250 mg of Thiamine helps.  

When I started GFD I counted 19 symptoms going back to childhood that improved with Gluten Free Diet and vitamin D.

I still take 10,000 IU a day to maintain 80 ng/ml and get it tested 4 times a year. Highest was 93 ng/ml and that was at end of summer.  Any excess is stored in fat or excreted through bile.  

The western diet is deficient in many nutrients including choline and iodine.  Thats why processed foods are fortified.  Celiac Disease causes malabsorption of vitamins and minerals from the small intestine damage.  GFD stops the damage, but you will still have symptoms of deficiency until you get your vitamins repleted to normal. 

Try to reduce your omega 6:3 ratio.  The Standard American Diet is 14:1 or greater.  Healthy is 3:1.  Wheat flour is 22:1.  Potatoes are 3:1 while sweet potatoes are 14:1.  So those sweet potatos that everyone says is better than Russet: they are increasing your inflammation levels. 

 

The nutritional deficiency & supplements advice is priceless. I have suspicions I have celiac disease but absolutely cannot put myself through the gluten challenge process to verify the diagnosis. Compounding the probable celiac disease, I feel, is my disastrous reactions to being prescribed years of prilosec/omeprazole, which I finally took myself off of due to symptoms of nutritional deficiencies, followed by being placed on it by my GI for GERD in stints of 2 months off and on. And I suspect it’s possible that a fluroquiolone antibiotic I took also contributed to existing lifelong malabsorption problems. I have made a lot of stringent diet adjustments (super strict about avoiding gluten contamination and I incorporate fermented things) & exercise regularly (walking, resistance, stretching) plus I take Vitamin D3, B6 and B12, but severe muscle spasms, muscle soreness, deep fatigue, joint inflammation and tendency to infections and brain fog keep dogging me. 

I appreciate the supplements and the Omega ratios advice very much!! 

[Aleda D]

Oh, also, just based on my horrific reactions to them and continued aftereffects, I will never consent to take another PPI, nor another fluoroquinolone-related antibiotic. I am alarmed to read PPIs are sometimes prescribed to infants and children. Even my dog was prescribed Prilosec. 
 

I don’t see how medications that indescriminately kill off digestive flora can actually help with celiac disease and NCGS, as these conditions already block healthy digestion.

In my case, I took a PPI daily for about 4 years as prescribed by my GP, developing arthritic symptoms at an alarming rate in my 40s and 50s. I remembered the worst GERD event being when I ate a saltine at 10 AM, breaking the nightly fast. Volcanic GERD. What’s in a saltine? Wheat. I cut out wheat and barley and rye, and eventually oats (still eat certified gluten-free oats though) and have been eliminating gluten and gluten-contaminated foods since 2013. But the most recent PPI treatment for breakthrough GERD scar tissue narrowing my espophagus kicked arthritis and muscle pains into high gear, making me feel 190 years old. I stopped the PPI after a month of suffering. The medicine was much worse than the ailment. So my advice to those with celiac disease and NCGS is to avoid fluoroquinolones and PPIs. Find the cause of the escaping acid and address it. In my case, I regularly need animal derived protein to mop up all the acid I seem to produce. I hate that, because I’m an animal lover, but it is what it is. 

[Scott Adams]

5 hours ago, Aleda D said:

The nutritional deficiency & supplements advice is priceless. I have suspicions I have celiac disease but absolutely cannot put myself through the gluten challenge process to verify the diagnosis. Compounding the probable celiac disease, I feel, is my disastrous reactions to being prescribed years of prilosec/omeprazole, which I finally took myself off of due to symptoms of nutritional deficiencies, followed by being placed on it by my GI for GERD in stints of 2 months off and on. And I suspect it’s possible that a fluroquiolone antibiotic I took also contributed to existing lifelong malabsorption problems. I have made a lot of stringent diet adjustments (super strict about avoiding gluten contamination and I incorporate fermented things) & exercise regularly (walking, resistance, stretching) plus I take Vitamin D3, B6 and B12, but severe muscle spasms, muscle soreness, deep fatigue, joint inflammation and tendency to infections and brain fog keep dogging me. 

I appreciate the supplements and the Omega ratios advice very much!! 

Be careful about how much B6 you take, as it can cause issues if you take too much of it over time.

[Aleda D]

1 hour ago, Scott Adams said:

Be careful about how much B6 you take, as it can cause issues if you take too much of it over time.

Thank you for the warning. I get blood tests twice a year to check where I stand with the vitamins I regularly take, so I appreciate the extra reminder. I know some vitamins don’t build up but now I will watch the B6 for sure.