results from 13 day gluten challenge - does this mean I can't have celiac?

[catnapt]

20 minutes ago, knitty kitty said:

Yes, that's the same dismissive medical professional attitude I encountered.  

Too bad.  

I'm sorry Knitty kitty but you have to admit having someone who does not have access to your medical history and who is not really paying close attention to what someone is telling them but is intent on tossing out theories, diagnosis , and advice for tests etc etc- you have to expect that no thinking person  is going to blindly accept the word of a random stranger on the internet

Come on be real here! 

you have education in a certain select field but that does not make you a dr. It does make you a valuable resource for looking at other options and possible treatments etc that the mainstream medical system does not endorse or even care about, due to the lack of a profit motive

 

I'm not dismissing YOU or your knowledge, but your application of it to my life and "case" as it were- I find somewhat offensive (YOU decided that YOU have eliminated celiac disease in my case...? seriously??? can you put yourself in my place and imagine how you'd feel if someone on the internet started telling you what THEY think your problem is

as if they are some sort of authority

you are NOT.

 

I'd love to continue chatting with you, you do have some interesting and valid insights but when it comes to ME and MY BODY-

I'll tell you the same thing I tell my drs- they may have the schooling but NO ONE knows my body like I do

discounting or dismissing or even misreading what I am saying about MY BODY is disrespectful and not helpful to a working relationship.

 

My drs records are FULL of mistakes that they refuse to correct!
 

but when I see a new dr whose word to they take? the old drs inaccurate records and not mine

 

we have been in the same places, lets not hurt each other ok?

any more than we have already been hurt

sorry If I came off in a way that was hurtful but - you're not really listening to me, either.

 

[knitty kitty]

39 minutes ago, catnapt said:

you do have some interesting and valid insights

Discuss them with your doctor and dietician.

Edited February 9 by knitty kitty
Clarification

[knitty kitty]

@catnapt,

You would do well to get a DNA test done.  You could be seronegative Celiac.  

[trents]

@catnapt, as you already know I believe, a DNA test cannot be used to diagnose celiac disease but it can be used to rule it out. That might be helpful to you in distinguishing between celiac and NCGS. If you don't have the celiac genes, you can put to rest any and all suggestions to undertake a gluten challenge.

[Wheatwacked]

On 2/6/2026 at 12:40 PM, catnapt said:

She also appears to be inexperienced and unsure of herself.

You can help her lead the way.

[Wheatwacked]

Hello @catnapt,

8 hours ago, catnapt said:

NO ONE knows my body like I do

That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.

 

You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.

 

So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare?

There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me.

We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone.

Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue.

Vitamin D, Calcium and Iodine are closely interactive.

It is not uncommon for postmenopausal women to have insufficient intake of Iodine.  

Quote

The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis in areas where iodine deficiency is endemic.   https://pubmed.ncbi.nlm.nih.gov/28953213/

(RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals

You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.

Edited February 10 by Wheatwacked

[Wheatwacked]

Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas.

It is not https so browsers may flag a security warning. There is nothing to send or receive.

http://doodlesnotes.net/index3.html

I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41

to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.

[catnapt]

On 2/9/2026 at 9:46 PM, Wheatwacked said:

GFD

what does this mean?

[trents]

25 minutes ago, catnapt said:

what does this mean?

Gluten Free Diet

[catnapt]

 

 

On 2/9/2026 at 9:46 PM, Wheatwacked said:

You mentioned a mysterious Calcium issue.

it's not mysterious, it's currently not officially diagnosed as labs are presenting a very complicated case with multiple potential causes-

and of course they each have a different treatment. 

 

On 2/9/2026 at 9:46 PM, Wheatwacked said:

Vitamin D, Calcium and Iodine are closely interactive.

hmm... well everything you put in your body is interactive with everything else

 

are you assuming I have an iodine deficiency? 

I seriously doubt it but I'll check the iodine content of my nori sometime to see if maybe I'm getting too much... too much is bad too.

On 2/9/2026 at 10:20 PM, Wheatwacked said:

Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas.

It is not https so browsers may flag a security warning. There is nothing to send or receive.

http://doodlesnotes.net/index3.html

link doesn't work

I've spent hundreds if not thousands of hours crafting a good optimal diet for my particular needs.  Yes definitely thousands of hours. I have enjoyed it immensely and will continue to refine my diet as it suits me and my own physiology. 

. My body has decided it will not work properly, either due to an adenoma (benign) or hyperplasia and/or a small kidney defect (that remains to be seen but it's not looking good) and/or we don't yet know.........

it does NOT look like it's one single issue, it appears to be at least two different ones

not going to give out my full medical history here for ppl to second guess (unless one or more of you have a medical degree and specialize in gastroenterology, nephrology, endocrinology, rheumatology etc)

I got permission to stop the drug I was on (I was going to stop it without "permission") so in the meantime I have to walk a VERY VERY fine line with vit D and calcium intake to avoid losing any more BMD than I already have.

while I wait til the next round of testing I MAY be able to tolerate a gluten challenge that doesn't have the addition of a confounding variable (the drug I just stopped)

it was impossible to tell what symptoms were from the gluten challenge and which were from the drug

 

[Wheatwacked]

3 hours ago, catnapt said:

link doesn't work

link works but you may have enhanced security blocking it.  In Edge you have to click on continue to site when the security warning opens.  Other browsers or antivirus may just block it because it is not https.

Edited February 11 by Wheatwacked

[Wheatwacked]

3 hours ago, catnapt said:

not going to give out my full medical history here

Your choice.

"Too much is too bad too"

Yes I do think you might be iodine deficient.  The intake of iodine has decreased in the US by 50% since 1970.  Allowing for Celiac Disease malabsorption you are likely to be borderline on several nutrients.   I tried eating kelp but lost interest after a few months in the taste and effort to prepare.  Cut with scissors, soak, chew.  I did get noticible improvement in my muscle tone, specifically in my chest muscles but I was also set back by all the scary warnings of too much.  I now use Liquid Iodine 50 mcg/drop from Pipingrock.com.  It allows me to accurately intake 600 mcg, which is right in the middle of the safe range (150 to 1,100 mg.  By the way the Safe Upper Limit set in Japah is 3000 mcg) according to NIH.  Why guess?  Two years now and vision is recovering in my blind right eye, a sebacious cyst that would not heal since 2014 is almost completely healed (it was biopsied as Basal Cell carcinoma last year and doctor said my liver, kidneys, heart, lungs are perfect.  Almost all belly fat is gone and I am starting to feel more like the 25 year old I once was, instead of the decrepid 75 year old I became.

Quote

However, reviews by Baker and Hollowell in 2000 (4), Bürgi in 2010 (5), and Leung and Braverman in 2012 (6) reported that iodine supplements at low (1.5–8 mg/day) and intermediate doses (10–32 mg/day), ingested from a variety of sources (Table 2), are well-tolerated in euthyroid subjects, maintaining levels of thyroid hormones (thyroxine and triiodothyronine) and thyrotropin within normal limits (3–16). Only very high doses (>30 mg/day), mainly as iodide (I−), generate hypothyroidism and goiter, which rapidly revert to normal when these individuals stop taking the high-iodine supplement. On the other hand, considerable evidence indicates that iodine per se can ameliorate physiopathologies of several organs that take up iodine, primarily the thyroid, mammary, and prostate glands and potentially the pancreas, gastric, and nervous systems, and it may act as an antioxidant in the whole organism if this element is ingested at concentrations higher than 3 mg/day (17). Dose-response studies in humans demonstrated that iodine at concentrations of 1.5 mg/day or less had no effect, whereas concentrations of 3, 5, and 6 mg/day, mainly in the form of molecular iodine (I2), exhibited significant beneficial actions in benign pathologies (mastalgia or prostatic hyperplasia) and antineoplastic effects in early and advanced breast cancer (14–16,18,19). These studies included treatments lasting from 5 weeks up to 2 years, and at these concentrations they do not exert any secondary effect. Some of these studies also analyzed higher concentrations of iodine (9 and 12 mg/day) and showed that these doses resulted in the same benefits but caused transient hypothyroidism in 20% of the studied individuals, while also producing an assortment of minor side effects (upper respiratory tract infection [26%], headache [20%], sinusitis [12%], nausea [9.9%], acne [9.0%], back pain [9.0%], diarrhea [9.0%], dyspepsia [8.1%], rash [8.1%], and abdominal pain [6.3%]) which disappeared when the high iodine supplement is stopped (15). Antiproliferative and apoptotic effects have also been observed in preclinical studies, in which rodents (20,21) or tumoral cell lines (3,22) are exposed to micromolar concentrations of I2.    https://pmc.ncbi.nlm.nih.gov/articles/PMC3752513/

 

 

[Wheatwacked]

I don't understand why you are continuing to persue a differencial diagnosis of celiac disease vs. NCGS.  Once you stop eating gluten, those symtoms will go away.  One less thing to worry about.  You improve without gluten so you proved the point.  Why beat yourself up?  Without gluten you can focus on the symptoms that remain and maybe over time, with the right nutrition for you, full recovery.  But it takes time to undo a livetime of poisoning.

I'd still like to know your vitamin D.

Feel free to ignore me.

 

[catnapt]

happy that  your iodine routine has been so miraculous for you

 

what other amazing things has iodine done for you?

 

 

[Wheatwacked]

 

[Wheatwacked]

 

[catnapt]

18 minutes ago, Wheatwacked said:

don't understand why you are continuing to persue a differencial diagnosis of celiac disease vs. NCGS.  Once you stop eating gluten, those symtoms will go away.  One less thing to worry about.

fortunately you don't need to understand anything that doesn't directly affect you. 

🤗

you earlier assumed I was deficient in nutrients and minerals due to celiac malabsorption but...... now it doesn't matter? because why? it might mess up your deficiency argument? 

if you don't know the difference between having actual celiac disease and NCGS....!!!!

correct me if I'm wrong but actual celiac disease causes actual physical damage to your body and increases your risk of certain cancers... just as a start. I have an identical twin sister- IF I have celiac disease, chances are she may too. I have a daughter and other first degree relatives...

you also get ADA protections with an actual celiac diagnosis. 

but again, not your decision to make  nor to understand.

but to suggest that there is no valid reason to find out for sure is incomprehensible on a board dedicated to celiac disease. if you ask me

but you didn't so- nevermind.

 

don't worry though, another member has declared that in her expert opinion based on who knows what- that I don't have celiac!!!  but instead I am "full of beans" and probably killing myself for eating such scary things, I don't know.

 

if you think you can diagnose me off one single biomarker and a hunch of some sort...based on your history and some research study that you think is relevant-

um, well,

Glad to meet you, Dr McCoy aka Bones. 🫠

I did not know this was a place where strangers want to play doctor 

I am hoping to hear from other members who are not so quick to make judgements and... stuff, let's just leave it at that...

perhaps there aren't any. 

time will tell I guess

 

 

 

 

 

 

 

 

 

 

[catnapt]

34 minutes ago, Wheatwacked said:

 

I can't read any of this...

the print is too small and it looks like all you eat is milk, cereal cookies and some fruit..?

 

and some coffee? 

 

[Wheatwacked]

 

Click on the image to make it larger.  Maybe doesn't work on phone browser,  That was from 2021.

25 minutes ago, catnapt said:

correct me if I'm wrong but actual celiac disease causes actual physical damage to your body and increases your risk of certain cancers... just as a start. I have an identical twin sister- IF I have celiac disease, chances are she may too. I have a daughter and other first degree relatives...

Absolutely, they should be tested,

The point is you have symptoms that the doctors don't understand and malabsorption may be the cause.  

49 minutes ago, catnapt said:

if you think you can diagnose me off one single biomarker and a hunch of some sort...based on your history and some research study that you think is relevant-

Not trying to.  But much of your rant includes refeferences that may indicate multiple nutritional deficiencies.  

 

57 minutes ago, catnapt said:

but to suggest that there is no valid reason to find out for sure is incomprehensible on a board dedicated to celiac disease.

Some countries also have tax incentives and financial aid for Celiacs.  

Celiac disease is recognized as a disability under the ADA because it substantially limits major life activities like eating and digestive function. Protections require reasonable accommodations in public accommodations, including schools (504 plans), colleges, and hospitals. These often include providing safe, gluten-free food, though they do not force restaurants to provide it. 

As far as your recovery, eat gluten free.  Get healthier now and worry about diagnosis later.  Many here on the forum have gone ten or more years looking for a diagnosis, with many doctors and many misdiagnosis along the way. It really doesn't matter why, but you cannot eat  gluten.  That is what is important.  With gluten out of the way, maybe the doctors can make sense of your remaining symptoms.  If you need the ADA, then a medical diagnosis is the way to go.  Meantime you are delaying your recovery from whichever celiac disease or NCGS and the inevitable step one of Gluten Free Diet.

tWe come to share experiences and maybe it will help someone.

In reality, I don't care.  By the way I have stopped 6 medications Against Medical Advice because they did not do their job and the side effects were crippling.

This is a lifelong fight for your life.  Pick you battles carefully.  Assume the worst, celiac disease, and deal with it.  Denial is not just a river in Egypt.

53 minutes ago, catnapt said:

Glad to meet you, Dr McCoy aka Bones. 🫠

Pleased to meet you, too.

 

Quote

 

 

Merck Manual Profession Edition: Celiac Disease and NCGS

Celiac disease is an immunologically mediated disease in genetically susceptible people caused by intolerance to gluten, resulting in mucosal inflammation and villous atrophy, which causes malabsorption. 

Nonceliac gluten sensitivity (NCGS), or gluten intolerance, is a nonimmune–mediated reaction to the ingestion of gluten. Similar gastrointestinal symptoms are noted as in patients with celiac disease, but biopsies will show normal villi and serologic markers will exclude celiac disease (and wheat allergy). There are some reports of nonspecific serologic markers that may be elevated in NCGS (3). As compared to celiac disease, gluten sensitivity has no serious negative effects on overall health, and its effects are mainly limited to uncomfortable gastrointestinal symptoms. As with celiac disease, the treatment is gluten avoidance.

 

[catnapt]

54 minutes ago, Wheatwacked said:

Meantime you are delaying your recovery from whichever celiac disease or NCGS and the inevitable step one of Gluten Free Diet.

I'm not delaying my recovery- I was well on my way to recovering, IF I do have celiac disease by listening to my body and not eating the foods that made me feel ill.

the drug I just stopped taking was making me incredibly ill and it's unfortunate and more than  a little frustrating that the dr

 

[catnapt]

oh geez!!
i made a whole long detailed post and it didn't save it

 

I give up

grrrrrrrrrrr

 

[Wheatwacked]

59 minutes ago, catnapt said:

IF I do have celiac disease by listening to my body and not eating the foods that made me feel ill.

Keep it up.

 

[catnapt]

just a few days off of that drug and my digestive system is finally getting back to normal

stopping the gluten challenge was not enough to get back to normal, I was still horribly constipated with what seemed like a paralyzed digestive track- nothing was moving!

but now, with a few mag citrate capsules that I had to order online and stopping the chlorthalidone, things are getting back to my usual "working well" digestion

 

so it's clear that the symptoms I had during the gluten challenge were compounded by the new med that was started the same day (I feel like the Dr really should have known better than to do those two things at the same time, add a new drug and start a new diet protocol... but I'm just the patient, what do I  know, right?)

 

I am going to do another 24 hr urine in a few weeks to see if lowering the dose of vit D gets my urine calcium down to a more tolerable level.

that's the plan. 

hope it works.