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Tylenol warning


GFinDC

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GFinDC Veteran

Just a warning to avoid acetimenophen (Tylenol, APAP).  This link is a story about a woman who took several OTC meds for a cold and her liver was destroyed by the acetimenophen in them.  Did you know they also call acetimenophen APAP on some med labels?  So she took several meds with it and her liver was ruined.

Open Original Shared Link

A WebMD article on unrecognized ingredients in OTC drugs is linked below.  The tricky thing is you have to check cold meds etc for APAP and acedtimenophen and make sure you aren't exceeding the liver destroying toxic limit each day with the combo of meds.

Open Original Shared Link

Not something most people are thinking about at the drug store I figure.


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cyclinglady Grand Master

Worse yet is Stephen Johnson Syndrome where medications like Tylenol can cause your skin to blister off.  Horrifying!  

Open Original Shared Link

I do not take any OTC medications.  None.  I just tough it out.  That is because I usually react (anaphylactic) to medications like acetaminophen, NSAIDs, etc.  Prescription drugs are included too.  Each new prescription can be scary, so unless it is life-threatening, I take nothing.  If I do, I am already in the hospital and they can treat my reaction.  

If you have period cramps, take a bike ride, use a heating pad — anything to  get your mind off your pain.  Have cold?  Bone broth or chicken soup to keep hydrated.  Use a Nedi pot and follow the directions!  Fever?  Use those blue cold packs to adhere to your body.  Some fever is good.  It helps to fight the infection.  And then rest.  It can heal so many things.  

We are just too quick to take a pill to ease our symptoms.  There are benefits and risks to all drugs and supplements!  I am not even going to get into the fact that 60% of all generic drugs (those cheap $4 presciptions at the local big box stores issue) are manufactured in India and China.  Now the FDA is struggling to send their dozen or so inspectors to check on some 6,000 or more pharmaceutical companies in India alone.  Reports of medications not working, unclean factories, the list is long. 

Open Original Shared Link

Open Original Shared Link

Posterboy Mentor

GFinDC,

I know what you mean. . . sometimes you wonder how this seemingly safe drugs can have drastic health consequences.

I ran into some rather startling news about NSAIDs' that might be worth sharing about a year ago but wasn't sure where might best be the place to share until this thread come up.

Most people are at least a little aware if not acutely aware long term use of NSAIDS can cause possible kidney damage.

If they are not I want to post this link to educate them of this/these dangers.

entitled "Significant Acute Kidney Injury Due to Non-steroidal Anti-inflammatory Drugs: Inpatient Setting"

Open Original Shared Link

and why (one of many reasons) I don't use NSAIDS for pain unless it is absolutely necessary.

the other is the recent link I found about NSAIDs and it's link to GI problems (at least to me unknown by most) I would guess until last year.

Here is the dailybeast (with links to the study's)

Open Original Shared Link

here is the link to research if anyone want's to view it at it's source enitled

"Effect of non-steroidal anti-inflammatory drugs on the human small intestine."

Open Original Shared Link

We can start another thread about NSAIDs so this topic/thread doesn't veer too far off topic because the link to Kidney damage is well established with NSAIDs.

I had a friend sadly who though I tried to convenience them of this fact/association of kidney issues with with NSAIDs that they couldn't stop taking them for arthritis pain and they eventually died not of arthritis but acute kidney failure. . . mainy celebrex (though they used other NSAIDs) but I think they advertise Celebrex as the milder NSAID for kidney issues.

or at least they did.

see here where pfizer was urged to pull the drug for safety concerns in 2014.

Open Original Shared Link

but they did not of course and you can't keep a (bad drug my words) down when there is money to be made.

to be fair to both sides see this forbes article from the precision study that claims celebrex to be safes as ibuprofen.

Open Original Shared Link

but ironically ibuprofen is not all that safe either.

and they (pfizer) spent $500 million to prove it's "safe as" other NSAIDs study.

see this daily mail article that shows how for ibuprofen (might be unknowlingly) causing you GI problems.

Open Original Shared Link

again not to mention most likely causing you kidney failure in the mean time.

Ironically what is so surprising about this latest news/finding on NSAIDs is that Aspirin get’s a “bad rap” about being bad for  your  “stomach” and maybe rightly so but you don’t hear about any of the danger’s that NSAID’s can do to your Lower Instestine? (GI).

If ever the phrase applied “Pick your poison” carefully.  Take Aspirin and hurt/mess your stomach up pick an NSAID and cause/mess up your Lower Intestine/GI causing Celiac like problem’s!

I know I had a reaction to the ARBS "artan" class of drugs like Losartan though only Benicar has  a warning on it.

see this thread.

again I hope this is helpful.

I ask that you "Learn from my mistakes" that you too won't be struck by the same ill health for 30 years too long!

and why I do take a prescription medicine for my heart arrhythmia I have found taken Magnesium Glycinate has helped it . . .so that I hope some day soon to be off that as well.

I can only hope.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

 

 

 

GFinDC Veteran

@ CL, Thanks for the links CyclingLady.  That's interesting the generic drugs pricing is being so impacted by the Indian drug companies.  You must be one tough bird not taking any pain killers.  Congrats! :)   I know a fella that is anti-painkiller here and prefers to tough it out too.  Not for any physical reaction reason but for some personal preference.

@Posterboy;  Thanks for the links PB.  I wasn't aware of the issues with ibuprofen and kidney damage.  That's pretty bad stuff.  Hopefully more people will become aware of the possible problems with these "safe" drugs and avoid them.  That article about Celebrex kicking in celiac disease is eye-opening.  Sounds like cox-2 inhibitors are something everyone should avoid.

 

plumbago Experienced

I would not say to never take Tylenol, but I would recommend stopping by a pharmacy and speaking to the pharmacist about what you plan on taking. This is a most underutilized resource! And, they are most willing to help.

Absent from the WJLA story - aside from the date! (Fox had it) - was the amount she was taking daily (even an estimate) and if she had prior liver disease. But drug induced liver injury is common in this country, and something to be alert for. Why large labels about acetaminophen have not been put on cough and cold medications is beyond me. They should be there.

I shy away from NSAIDs (I've not found Tylenol to be as effective), and take them only when absolutely necessary. Not taking them regularly, I find, makes them more effective when I do.

cyclinglady Grand Master

@GFinDC

Believe me, I am seriously contemplating getting some marijuana as it is legal here in California.  I worry about gluten cross contamination.  That could be remedied though if I grow some plants in my veggie garden.  Do you think they carry plants or seed at Lowe’s or Home Depot?  ?. Then there is the potential allergic side effects for me.  So, I am not really tough, I just do not have many options! 

I am not trying to scare anyone.  I had a tooth infection last year and I took antibiotics.  It is just that everything we do in life has a benefit and risk.  Not everything  is all hunky dory as depicted on those pharmaceutical commercials!  

Just a side note....and totally off topic.

My high school kid is receiving “junk” mail from universities almost daily.   Me?  I just received my first unsolicited brochure from our local mortuary!  ?  

Vickideen Newbie
35 minutes ago, cyclinglady said:

@GFinDC

Believe me, I am seriously contemplating getting some marijuana as it is legal here in California.  I worry about gluten cross contamination.  That could be remedied though if I grow some plants in my veggie garden.  Do you think they carry plants or seed at Lowe’s or Home Depot?  ?. Then there is the potential allergic side effects for me.  So, I am not really tough, I just do not have many options! 

I am not trying to scare anyone.  I had a tooth infection last year and I took antibiotics.  It is just that everything we do in life has a benefit and risk.  Not everything  is all hunky dory as depicted on those pharmaceutical commercials!  

Just a side note....and totally off topic.

My high school kid is receiving “junk” mail from universities almost daily.   Me?  I just received my first unsolicited brochure from our local mortuary!  ?  

I am trying CBS OIL since Tennessee will allow it.

 

 


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cyclinglady Grand Master
3 minutes ago, Vickideen said:

I am trying CBS OIL since Tennessee will allow it.

 

 

Keep us posted!  I hope it works.  

Gemini Experienced
1 hour ago, plumbago said:

I would not say to never take Tylenol, but I would recommend stopping by a pharmacy and speaking to the pharmacist about what you plan on taking. This is a most underutilized resource! And, they are most willing to help.

Absent from the WJLA story - aside from the date! (Fox had it) - was the amount she was taking daily (even an estimate) and if she had prior liver disease. But drug induced liver injury is common in this country, and something to be alert for. Why large labels about acetaminophen have not been put on cough and cold medications is beyond me. They should be there.

I shy away from NSAIDs (I've not found Tylenol to be as effective), and take them only when absolutely necessary. Not taking them regularly, I find, makes them more effective when I do.

Great post and so common sense! 

Not sure if I would take a bike ride when having severe menstrual cramps.  For some women, and me when I was younger and it mattered, have excruciating cramps to the point of passing out.  Good old Ibuprofen worked wonders but you do need to read the label and not abuse the amounts taken.  I rarely, if ever, need any OTC meds, except Benadryl, but have found that I can take just one 200mg and it works really well.  Definitely less is better most of the time.  As far as Tylenol is concerned, it never did anything for me so I never even consider taking it.

Gemini Experienced
1 hour ago, cyclinglady said:

@GFinDC

Believe me, I am seriously contemplating getting some marijuana as it is legal here in California.  I worry about gluten cross contamination.  That could be remedied though if I grow some plants in my veggie garden.  Do you think they carry plants or seed at Lowe’s or Home Depot?  ?. Then there is the potential allergic side effects for me.  So, I am not really tough, I just do not have many options! 

I am not trying to scare anyone.  I had a tooth infection last year and I took antibiotics.  It is just that everything we do in life has a benefit and risk.  Not everything  is all hunky dory as depicted on those pharmaceutical commercials!  

Just a side note....and totally off topic.

My high school kid is receiving “junk” mail from universities almost daily.   Me?  I just received my first unsolicited brochure from our local mortuary!  ?  

Why would you worry about gluten cc from a cannabis plant?  Oh, wait...maybe I shouldn't even bring that up!  ;)

cyclinglady Grand Master
3 hours ago, Gemini said:

Why would you worry about gluten cc from a cannabis plant?  Oh, wait...maybe I shouldn't even bring that up!  ;)

Because I am clueless as to how and where this plant is grown, who is handling it, etc.  I guess I have this notion that most people processing it might be a little too R E L A X E D, if you get my drift!  ?

Posterboy Mentor
5 hours ago, Gemini said:

Not taking them regularly, I find, makes them more effective when I do.

This is why I don't take them regularly unless I really need them.

Rebound headaches are a real thing especially when you overuse certain pain meds.

some are worse than others. . . and why some people get stuck on them.

see this mayoclinic article about this phenomena.

Open Original Shared Link

I hope this is helpful.

posterboy,

plumbago Experienced

Before I started taking anything, such as lysine, I would want to know for sure that I had the condition (in this case, herpes) and that I was not pregnant. Medscape has lysine in the avoid category for pregnancy or lactation. But it does say --

"Possibly effective for herpes simplex labialis treatment"

Medscape lists adverse effects of lysine as: Diarrhea, abdominal pain, chronic renal failure, interstitial nephritis.

Lots of animal products contain lysine naturally. For non-animal products, Livestrong says: "Beans, peas and lentils are among the most important vegan sources of lysine, but most varieties are actually higher in arginine and therefore more likely to promote replication of the herpes virus. Any food that contains more lysine than arginine can be helpful, but those with the highest lysine-to-arginine ratio are generally more beneficial. Although boosting lysine intake while consuming less arginine hasn’t been conclusively shown to prevent outbreaks, the therapeutic dose of lysine for herpes infections -- or the amount typically given in supplemental form to protect against outbreaks -- is 3 grams per day, according to NYU Langone Medical Center. A diet that includes plenty of fish, low-fat dairy products, turkey, chicken and lean cuts of beef could easily achieve this level, even when arginine is accounted for."

 

Gemini Experienced
15 hours ago, Posterboy said:

This is why I don't take them regularly unless I really need them.

Rebound headaches are a real thing especially when you overuse certain pain meds.

some are worse than others. . . and why some people get stuck on them.

see this mayoclinic article about this phenomena.

Open Original Shared Link

I hope this is helpful.

posterboy,

I never have headaches so consider myself lucky on that front.  I only need to take them if I have dental surgery and for that, it works quite well.  But I usually only have to take one and it gets rid of any lingering pain. I have been told by doctors that I have a very high tolerance to pain. 

I had an incident with an Erythema Nodosum, which is inflammatory in nature. I had a bump on my shin that appeared out of nowhere and it looked like a large mosquito bite. I ended up going to the doctor because it wasn't going away.  It did not bother me at all but I began to wonder what the hell it was...which was diagnosed as the above.  The dermatologist seemed astounded that I was not in any pain from it.  She normally has to put people on painkillers until it resolves. This was my look:  :blink:  I don't think so because it doesn't hurt.  I was even able to continue HIIT training on the treadmill, only each time I exercised, it got bigger and redder but no pain.  The solution is to go on Ibuprofin for a month and she tried to tell me that I would have to take high doses to get rid of it.  The woman was really nice and concerned and trying to be helpful but I knew I could do my own dosing when I went home.  I took less than half the dose she recommended for less than half the amount of time stated and within a couple of days that damn thing started to go away.  I stopped the Advil after one week and it never came back.  I know we do need doctors but they treat everyone the same.  I think this is one of the reasons so many people have reactions to meds......the dosing is too high.

Posterboy Mentor

Gemini,

6 hours ago, Gemini said:

I know we do need doctors but they treat everyone the same.  I think this is one of the reasons so many people have reactions to meds......the dosing is too high.

I agree.  like cyclylinglady I have had enough bad drug reactions (through the years) to have a natural suspicion.

Ironically as they work out sometimes as I was commenting on the rebound headaches (which is a nice read if you get the chance) for any considering taking NSAIDs  -- no matter how brief. . because it lays out well which are least likely to cause rebound  headaches.

I saw this new research on NSAIDs literally hours old and the phrase and "the hits keep on coming" comes to mind.

see this new Taiwan research on NAIDs entitled "NSAIDS increase risk of Irregular heartbeats"

Open Original Shared Link

and why I don't like population studies per se as you note we are all different it is a timely study and what I would take out of this is don't combine your NSAIDs' because taking more than one together a time accelerates the effect.

quoting

"NSAIDs stop proteins called cyclooxygenase, known as COX, and fall into two classes: “selective” COX-2 inhibitors (celecoxib, etoricoxib, or rofecoxib) and “nonselective” COX-1/COX-2 inhibitors (ibuprofen, naproxen, or meloxicam).

In this study, researchers defined anyone who took an NSAID for at least one day within a year of their AF as a “user.” Compared to nonusers, those who took an NSAID had an elevated risk of AF, the study found.

Nonselective NSAIDs were associated with an 18 percent increased odds for having AF, selective NSAIDs showed no difference, and combining both selective and nonselective NSAIDs went along with a 30 percent increased odds for having AF."

Again I hope this is helpful.

posterboy by the grace of God,

 

DevilGluten Apprentice

On the marijuana topic.... there is no gluten in marijuana.  If so, I'd have been dead a long time ago lol.  I've been smoking forever and I honestly think it is one of the things that have kept me going all these years before I got diagnosed.  Here is some interesting anecdotal evidence I found about MJ and celiacs... there are canniboid receptors in the intestine so MJ may actually help relieve the symptoms of celiacs.  I wonder if this will qualify me for a medical MJ card??  :)

Marijuana and Celiac Disease

Since it contains no gluten, cannabis won’t hurt people with Celiac Disease. In fact, it may do the opposite – a Open Original Shared Link conducted in 2013 at the University of Teramo in Italy found that cannabinoid receptors located in the intestines were more numerous in people with Celiac’s who’d gone untreated. Hence, the theory is that marijuana can target these receptors, cannabis and glutenproviding people with relief.

There is anecdotal evidence that speaks to this as well – throughout history, weed has been used as a way to help ease the discomfort of gastrointestinal disorders. It’s well-known for being an antiemetic (Open Original Shared Link) as well as an analgesic (something that numbs pain). It’s also a potent anti-inflammatory, making it beneficial to everyone, regardless of their ability to digest gluten.

This evidence appears to be good enough for the Open Original Shared Link as they, upon concluding government-sponsored reviews, reported, “For patients who suffer simultaneously from severe pain, nausea, and appetite loss, cannabinoid drugs might offer broad spectrum relief not found in any other single medication.”

Open Original Shared Link are usually the strain of choice for patients dealing with Celiac Disease. Doctors recommend these strains over sativas because of their ability to relax the muscles.

If the muscles are relaxed, muscle contractions slow down and make digestion easier. This relieves discomfort in the process

Marijuana may also help patients who suffer from weight loss – we all know that pot helps our hunger. And it may help with anxiety and depression too – stress is common in people with gluten-free diets as they’re forced to watch what they eat constantly. Going out to lunch or to someone’s house for dinner is challenging. Even grocery shopping is full of angst and apprehension.

People who can’t eat gluten can rest assured that their ganja is good to go. Edibles may contain gluten because of their supplemental ingredients, but cannabis itself is your BFF, regardless of dietary restrictions.

If you’re using it as a way to manage the symptoms of a disease, ask your budtender for strains that they recommend and then celebrate your new bud with a gluten-free beer. Some of it is not too bad.

  • 1 month later...
moleface Explorer

OTC pain medicines are essentially useless for significant pain in my experience. Ironically, opioids are actually much better for your body, aside from the physical dependence issues.

I always found it ironic that American doctors are so scared to prescribe fairly benign drugs like codeine that are OTC in pretty much every other developed nation, yet they have no issue substituting vicious toxic kidney-destroying NSAIDs. The biggest irony of prescription opioid medicines is that acetaminophen is the most physically harmful component of the pills.

When I got discharged from a hospital after major organ surgery a few years ago, the doctors refused normal pain medicine and instead prescribed me a harsh prescription NSAID that was specifically contraindicated for use with another medication I was taking. They wrote off the 1% stroke risk as being "too rare" to worry about, and treated me like I was engaging in "drug seeking behavior" for declining the medicine. Unbelievable.

I've had great experiences with niacinamide, which has strong COX inhibiting properties without a lot of the harsh  body effects of the synthetic NSAIDs. You don't take it for the niacin - this modified form of the nutrient just happens to have other pharmacological properties. There are warnings that it causes "reversible liver toxicity" (i.e. it's hard on the liver but doesn't cause permanent damage), but I've taken it for half a decade and my liver labs always come up healthy.

plumbago Experienced
On 4/26/2018 at 9:30 AM, moleface said:

There are warnings that it causes "reversible liver toxicity" (i.e. it's hard on the liver but doesn't cause permanent damage), but I've taken it for half a decade and my liver labs always come up healthy.

Fortunately the liver is a forgiving organ, as organs go.

Posterboy Mentor
On 4/26/2018 at 8:30 AM, moleface said:

I've had great experiences with niacinamide, which has strong COX inhibiting properties without a lot of the harsh  body effects of the synthetic NSAIDs. You don't take it for the niacin - this modified form of the nutrient just happens to have other pharmacological properties. There are warnings that it causes "reversible liver toxicity" (i.e. it's hard on the liver but doesn't cause permanent damage), but I've taken it for half a decade and my liver labs always come up healthy.

moleface,

I agree.

Niacinamide is the form to take.

It is non-flushing and hepaprotective.

see this link on "Protective effects of nicotinamide against acetaminophen-induced acute liver injury" european spelling

Open Original Shared Link

Niacinamide also controls inflammation in the body.

See this Hindwawi link entitled "Niacin Inhibits Vascular Inflammation via Down regulating Nuclear Transcription Factor-κB Signaling Pathway"

Open Original Shared Link

I have tried to tell people about my experience with both Niacinamide and Magnesium first as Magnesium Citrate and now Magnesium Glycinate.

They both helped me as much as any other vitamin/mineral combination I have ever taken.

I am glad to see Niacinamide also helped you.

Vitamins have a tough sell these days.

To cover both sides of the argument often they site the Northwestern University about the "bad side effects" of Niacin.

Open Original Shared Link

calling Niacin "too dangerous" for routine cholesterol therapy. . . but if you read more than the headlines.

They note but fail to emphasize all the patients were also taking a "statin regimen" but they didn't conclude Statins'  could also possibly cause the damage attributed to Niacin.

And Note it was the specially formulated "slow release Niacin". . .  not the Vitamin itself.

one attached to another drug quoting " who took extended-release niacin (vitamin B3) and laropiprant (a drug that reduces face flushing caused by high doses of niacin) to see if it reduced heart attack and stroke compared to a placebo over four years. All patients in the trial were already being treated with a statin medication."

Despite taking two other drugs in this study. .. they concluded the Vitamin was the cause of the increased liver problems reported.

Despite people on statins requiring routine liver test's (which conveniently) have now been eliminated for most people) taking statins.

How ironic/funny is that.  Of two possible drugs that could be causing liver problems including one that require(d) routine blood lab  monitoring for liver problems the researchers concluded the Vitamin was causing the problems.

 

On 4/26/2018 at 8:30 AM, moleface said:

They wrote off the 1% stroke risk as being "too rare" to worry about, and treated me like I was engaging in "drug seeking behavior" for declining the medicine. Unbelievable.

I couldn't of said it better.  When I declined my statin. .. and they still talk that way when I prefer a Vitamin over medicine.

Posterboy by the grace of God,

 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Trying to help those still suffering with the same helped I received when I found Niacinamide and Magnesium helped me.

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”

***I forget to say this is not medical advice just things that have helped me.  Check with your doctor to see if you should take Magnesium or Niacinamide first before changing your regimen.

 

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      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
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