Wheatwacked

Growing up I wondered why restaurants always put parsley on the plates when no one ate it. 

ten grams of parsley sprigs have Vitamin K (phylloquinone)164µg.

The RDA of vitamin K is 19+ years male: 120 mcg  female: 90 mcg.

Maybe your doctor would agree instead of the pills?

The USDA Food Data Centra is a good source of nutrition.

USDA Food Data Parsley, fresh

I'd be interested in your test results vis a vis the Celiac vitamins.

Why do you want to eat wheat?

Take the diagnosis and run.  In the worst case you can stop eating gluten free after say a six month trial.  Some, like recovering alcoholics never get over the craving.  Resistance is not futile.  Some wait as much as ten years to finally get the diagnosis.  Be sure to monitor your diet for vitamins and minerals.  During recovery you need way more than the minimum to rebuild.

On 9/16/2024 at 4:55 PM, glucel said:

that maybe aspirin was creating havoc with stomach and he abruptly said it doesn't cause any trouble and that celiac is the problem.

Malabsorption is a potential complication of bariatric surgery.  Is one your docs monitering vitamin D and other vitamins and mineral? Malabsorption due to the surgery and now adding the malabsorption from Celiac Disease?  Nutrition advice?

One hears stories; "You've got Celiac Disease, don't eat gluten.  Have a nice day".

Gluten Free stops the ongoing assault, but you need to also work on the deficiencies.  Can't heal without giving your body the tools it needs. 

I like your new doctor, he is telling you what you need to hear, not what you want.  Maybe you'll even get to like him.

A lot of the mistrust of aspirin, I think was the marketing campaign of Tylanol.  "Nine out of ten hospitals choose..."

Try disolving your aspirin in bicarbonate, or cut an Alka Seltzer Original (aspirin with bicarbonate) down to your required dose.  It is disolved so spends no time burning on the stomach floor and the bicarb temporatily nutralizes the stomach HCl.

Vitamin D concentrations <20 ng/mL are associated with a significant increase in the number of eosinophils in blood. 

On 9/13/2024 at 8:36 PM, Kkbug said:

I do not have the best relationship with food due to getting sick from it so frequently. My current CB and CMP indicated malnutrition. family history of a family member being gluten intolerant, but had declined testing due to not wanting to continue eating gluten. constant GI troubles for my entire life, have acid reflux, extreme bloating after every meal (also lactose intolerant and cannot eat citric acid). The current symptoms that caused these tested are all of the above plus breaking out in hives daily

As Scott said, "A weak positive is still a positive".

You could insist on an endoscopy with celiac biopsy.  One day without eating will not effect your blood work.  Weeks or months Gluten free will.  It all depends on the balance of benefits of an official diagnosis to the continued suffering while chasing the diagnosis.  

With your long history, including malnutrition and a family history, and the doctors don't know why, let us face it you are fighting a losing battle.  You have Celiac Disease, even if the doctors say no.  Some test negative and are positive biopsy, many on the forum have tested all negative, only to finally be positive up to ten years later. The ultimate test is to follow your family member's lead.  Get gluten out of your life and fix your malnutrition.  Yes it is difficult because we are engulfed in a society that considers wheat sacrosant but once you get over the addiction and clear the residual glutin from your body you will feel so much better.  Just GFD will not be enough.  Celiac Disease causes malabsorption of some twenty vitamins and minerals, explaining your malnutrition.  It is the malnutrition that will kill you.  Starting with your seriously compromised immune system vitamin D, evidenced by your eosiniphil count that the doctors can't account for.

Want proof?  Get tested for vitamin D, Thiamine, homocysteine and Urinary Iodine Concentration for starters.  It will show if you are deficient in vitamin D, B1, choline, B12, B6, folate and iodine.  You have to ask for these, doctors don't normally check.

You might want to see a dermatologist familiar with dermatitis herpetiformis, dermatitus herpetiformus as it is the dermatological symptom of Celiac Disease.  Many with dermatitis herpetiformis are seronegative and biopsy negative.  Some with dermatitis herpetiformis find that iodine can exasperate the breakouts so worth testing for.  The biopsy has to be taken in clear skin, near the pustules, not like other derm biopsies, so you need to find a dermatologist familiar with the procedure.

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Dermatitis herpetiformis (dermatitis herpetiformis) is the skin manifestation of celiac disease, presenting with a blistering rash typically on the knees, elbows, buttocks and scalp. In both dermatitis herpetiformis and celiac disease, exposure to dietary gluten triggers a cascade of events resulting in the production of autoantibodies against the transglutaminase (TG) enzyme, mainly TG2 but often also TG3. The latter is considered to be the primary autoantigen in dermatitis herpetiformis. Antibody Responses to Transglutaminase 3 in Dermatitis Herpetiformis

Here is an odd symptom I had.  I wear contact lenses (since 1972) and I always had to take them out every two weeks to clean "protein build up".  Not long after starting GFD at age 63, no more protein buildup.  I go on average 6 months now without taking them out.  Fibromyalgia gone.  I am pretty sure the gluten was incorporated in muscle and joints and was being attacked by the out of control T and B cells (not enough vitamin D to control them).

Can I prove it? No, but I no longer have pain. That's some kind of proof.

I am sorry if it sounds like bad news; but you'll thank me later.

On 9/15/2024 at 9:20 AM, moore.amy said:

I have had lifelong gi issues from dairy (although not with a2 milk) and high fat foods.

Issues with fat digestion often are the result of not enough cloline in the diet from avoiding eggs and red meat.  

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https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/#:~:text=Choline%2C%20especially%20phosphatidylcholine%2C%20is%20essential,NAFLD%20%5B44%2C45%5D.

In adults, the average daily choline intake from foods and beverages is 402 mg in men and 278 mg in women.  Adequate Intake for19+ years is 550 mg/day for males, 425 mg/day for females and 450 mg/day in pregnancy and 550 mg/day lactating.

 

On 9/15/2024 at 4:23 PM, moore.amy said:

My sister has an A2 jersey and i get fresh milk from her. It's a game changer. 

Awesome.

On 3/26/2022 at 1:02 AM, Jvn7 said:

Veggies and plain salads are usually my go-to lately because they make me feel better. Well, plant based diet I guess.

Eating foods that make you feel better. Good

Plant based diet, not so good.  In addition, for Celiac Disease, when you eat gluten free there are food fortifications that are required in not gluten free processed food but are not in gluten free foods.  In addition to the list on this website, consider iodine (in the US population iodine intake deceased and choline (eggs, meat, dairy, fish) deficiency...

7 Nutrients That You Can’t Get from Plants

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     Iodine and Iodine Deficiency: A Comprehensive Review of a Re-Emerging Issue

     In the total U.S. military population, from 1997–2015, the incidence of clinically diagnosed iodine deficiency substantially increased in males but overall was more common in females and racial minorities [24]. Hypothyroidism, a symptom of severe iodine deficiency, is present in approximately 5% of the U.S. population. 

Other consumer practices that may contribute to recent declines in dietary intake of iodine include veganism and some forms of vegetarianism

 

The good news is that acccording to the tests done she is being compliant about GDF and with no other symptoms is thriving.  The bad news is that she is very sensitive to gluten.  That would likely indicate a compromised immune system from multiple vitamin deficiencies.  Has she been checked for 25(OH)D Serum Level?

Eat Right for Your Spine When your vitamin D levels are restored through supplementation, your pain may significantly decrease. Before taking vitamin D supplements for your lower back pain, talk with your doctor about possible side effects and proper dosage.

Ask about your prescriptions.  Some of your symptoms are possible side effects of the drugs.  Several BP meds crippled me, I take Clonidine now.  Metformin and other diabetes meds turned me zombie like after 3 months on them.  They all comprimise the immune system and that is why vitamin D is so important.

The impact of methotrexate therapy with vitamin D supplementation on the cardiovascular risk factors among patients with psoriasis; a prospective randomized comparative study  Adding vitamin D supplementation to methotrexate may protect lipid homeostasis, specifically cholesterol and triglycerides.

Vitamin D May Be Connected with Health-Related Quality of Life in Psoriasis Patients Treated with Biologics Instead, in our groups of patients treated with biologics, a higher serum concentration of vitamin D seems to be associated with a better outcome of psoriasis.

For the joint and muscle pain (fibromyalgia) I've been on Prednisolone for 12 years, saved my life.  At first it took 30+ mg a day just to be out of bed.  After I started  GFD two years later I am able to maintenance on between 5-15 mg a day depending on activity.  Most important: pain free and no side effects for years now.

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Most common adverse reactions associated with TREMFYA are: • Plaque Psoriasis and Psoriatic Arthritis (≥1%): upper respiratory infections, headache, injection site reactions, arthralgia, bronchitis, diarrhea, gastroenteritis, tinea infections, and herpes simplex infections. (6.1) • Ulcerative Colitis • Induction (≥2%): respiratory tract infections. (6.1) • Maintenance (≥3%): injection site reactions, arthralgia, and upper respiratory tract infection. (6.1)  TREMFYA® (guselkumab)

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Methotrexate can sometimes cause side effects, which may include:

• feeling sick, headaches, vomiting, diarrhoea, shortness of breath,mouth ulcers, minor hair loss and hair thinning, rashes.
• If you're concerned by any side effects, contact a health professional for advice.  Methotrexate: Side effects and risks

 

11 hours ago, kate g said:

shes on liquid iron from dr

Why the iron?  Have the doctors tested for vitamin D.  Is she eating enough eggs, milk, meat?

Start her on the Thiamine today.    The minimum for a child of four years is 0.6 milligrams.  That's 600 mcg.  That is 3X the minimum folate (200 mcg).  fThere is no established upper limit for thiamin intake in humans because there is no evidence of adverse effects from high thiamine intake.

There is plenty of evidence something bad IS happening now. Thiamine is NOT a medical issue, it is a food issue. 

The World Health Organization recommends daily oral doses of 10 mg thiamin for a week, followed by 3–5 mg/daily for at least 6 weeks, to treat mild thiamin deficiency [23]. The recommended treatment for severe deficiency consists of 25–30 mg intravenously in infants and 50–100 mg in adults, then 10 mg daily administered intramuscularly for approximately 1 week, followed by 3–5 mg/day oral thiamin for at least 6 weeks. Thiamin Fact Sheet for Health Professionals there is a list of foods with thimin content,  Breakfast cereals, fortified with 100% of the DV for thiamin, 1 serving1.2 mg 100%

I think waiting a long time to see a doctor before giving more thiamin is a mistake and puts her in unnecessary danger due to a beauracracy. Ideally get tested today, start tomorrow but wait weeks, while she suffers?  I could not do it.

Since you probably both eat the same diet, I suggest you both get tested for Urinary Iodine Concentration and Low serum levels of 25(OH)D.  TSH is not a good indicator of iodine sufficiency.

The WHO recommends a woman has an iodine level of 150ug/l to maximise fertility and the health of her baby’s growing brain.

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The Effect Iodine Supplement on the Sexual Activity &nbsp;And Semen Characteristics of Friesian Bulls

There was a significant (P<0.01) increase in testosterone, T3 and T4 level for iodine supplement group in comparison to the control one. It could be concluded that, potassium iodide supplement to the bulls have a beneficial effect on growth and maturation as well as, semen quality and quantity. It improves the endocrinological output of hormones.

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Low Iodine Intake May Decrease Women’s Fecundity

It indicated that mildly iodine-deficient women required a significantly longer time to get pregnant than women with iodine sufficiency. It is consistent with the results of a prospective cohort study that women with severe iodine deficiency had a lower chance of becoming pregnant when compared with those with normal iodine intake 

Whether Celiac Disease or gluten intolerance (in the US it is an official diagnosis of Non Celiac Gluten Sensitivity) if you go back to eating wheat it will come back.  You already know how much 3 days helps, imagine a lifetime of improvement.  Gluten is addictive.  It affects the opiod receptors.  But you do need at least 4 slices of bread or the equivalent a day until testing is complete.  They are looking for antibodies and damage to your small intestine.  Take gluten away the damage stops, and it is easy to miss.

Please read this article from Mayo Clinic Proceedings.  I have personally been taking 10,000 IU a day since March 2015.  When I take it my blood level stays around 80 ng/m (200 nmol/L), when I don't it drops fast.  In the spring my blood was 93 ng/ml so I stopped taking it.  In July even with the summer sun it had dropped to 74 ng/ml.  I get blood tests 4 times a year.  In a week of 10,000 a day back in 2015 (Gluten free in November 2014) I started to feel remarkly better.  But the blood level goes up slowly.  In 2019 mine was at 47 ng/ml, two more years to get to 80 ng/ml (200 nmol/L. The UK passed laws against vitamin D and got most of the world to follow, in response to a manufacturing error in baby formula in early 1950's that caused an epidemic of infant deaths.  I have noticed that the studies that fail to show improvement use 30 ng/ml (75 nmol/L) as a safe cutoff point and usually low doses or short times periods of vitamin D. It seems that is mandated by ethics rulings imposed by government, not medical research.

The other deficiencies will get better on GFD.  There are reports that lactobacillus (from fermented pickles and bifidobacteria from yogurt are helpful, but vitamin D will not improve unless you take enough orally.

Interesting that the drugs to control your PsA forces you to avoid the sunshine vitamin D you need most for recovery.

Vitamin D Is Not as Toxic as Was Once Thought: &nbsp;A Historical and an Up-to-Date Perspective Mayo Clinic Procedings

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Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion...Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and sup pressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL.

Surge of information on benefits of vitamin D 

• Quote

   

  • McCarthy has been employing these methods since February 2007, and patient acceptance has been high. He said he checks each patient’s 25(OH)D level and supplements to reach a target of 80 ng/mL ... 
  • A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
  • Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
  • Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

   

  The role of vitamin D in autoimmune diseases

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  In line with these observations, patients with RA show basal serum levels of 25(OH)D lower than healthy controls, and a negative correlation between serum 25(OH)D and RA disease activity was revealed by multiple studies [14, 108, 109]. Notably, vitamin D deficiency also appears as an environmental risk factor for RA [14]. Different studies exploring the association between ultraviolet light exposure and RA risk showed a lower RA risk associated with higher UV-B exposure [110, 111]. In the same vein, vitamin D intake was inversely correlated with the risk of developing RA, at least in postmenopausal women [112]. Furthermore, genetic polymorphisms of VDR (e.g., FokI, TaqI), which may affect vitamin D function, seem to represent additional risk factors in the onset of the disease [19].

  Is vitamin D status relevant to psoriasis and psoriatic arthritis? A retrospective cross-sectional study

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there was an inverse correlation between 25(OH)D levels and disease severity (PASI). 

Welcome to the forum @Banana

12 hours ago, Banana said:

Hi everyone.  I'm in the UK.  Currently experiencing gastro problems.  I'm 68 and this is pretty much the first time in my life that my gut has caused me any trouble.

I was 63 when I started GFD and had been mostly stuck in bed since around 2012.  My symptoms were blamed on 30 years of alcohoiism.  Funny thing; after only 3 days of GFD, I stopped drinking and did not miss it.

Another test is antigliadin G.  It may be posistive even if the other tests are negative.

I was 63 when the acute version hit me 10 years ago.  No one mentioned the malabsorption causing malnutrition even though I was eating a "healthy diet"

As I understand it after 10 years is that the immune system becomes compromised (low vitamin D) Some attack on your system, could be as simple as a cold, gets those T and B cells running amuck, without enough D to keep them in check.

Add to that malabsorption caused by the damage to your small intestine villi, where most vitamins and minerals are absorbed, and the deficiencies caused by changes in your diet and the deficiencies inherent in our "western diet".  Each deficiency adds to your system with the symptoms each causes.  For example, low choline could be the cause of your bowel problems.  It is essential for digestion of fat.  Symtons ofter associated with gallbladder disease.  In fact choline is a large part of bile.

Nutrition tests I suggest because the are common but rarely looked for:

vitamin D 25(OH)D Serum Level

Thiamine deficiency B1

choline

Urinary Iodine Concentration   

B2, B3, B5, B12

Folate (B9)

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 "Serum T4 and T3 are even less specific indicators of iodine deficiency because they are modified usually only in conditions of severe iodine deficiency and are not recommended in routine assessment and monitoring... The findings of the UK survey have major public health importance as the UK is now number eight on the list of the top 10 iodine-deficient countries (based on national median UI less than 100 μg/l in children)   Thyroid and iodine nutritional status: a UK perspective

Here is the list I took.  I've been able to cut most back and get them from my diet now.  Iodine was the last added, in September 2023 and because of the scary stuff they say about it.  Vitamin D - 10,000 IU a day, Thiamine - 250 mg 1 to three times a day, Choline - I used to take phosphotidyl choline capsules but now I eat lots of eggs and beef.   Iodine - 500- 1500 mcg of Liquid Iodine,  These are the ones that had the most obvious improvements for me and I rarely skip them.

Additional likely deficiencies and what I took/continue to take to boost my intake (I get anorexic at the drop of a hat, so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle

1000 mcg B12 - creates hemoglobin for oxygen transport

500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

4 hours ago, knitty kitty said:

That's what fermented foods are for, the lactobacillus (probiotic) supplies us with lactose. 

Sorry Typo, I meant supples us with lactAse.  They make LactAse for themselves but we enjoy the benefits in a symbiotic relation.

"Humans started to drink mammal’s milk 11,000 years ago. Nowadays, cow, goat and sheep milks account for about 87% of the world milk production. The high incidence of allergies to cow’s milk components and autoimmune diseases is rising in the Western industrialized countries,"

Why not in non industrial countries, and why not for the previous 11,000 years?  These studies never seem to take into account our nutritional deficiencies and extremely high omega 6 to 3 ratio in our diet from processed foods and things like SIBO killing off the good intestinal flora. The controls usually eat gluten so it is no surprise for example to say that high AGA G is normal and is found in "healthy people", who by the way often take NSAIDs for pain.  Pain is not healthy even if the doctors say there is nothing wrong, it is only a normal part of aging in the industrial world. 

They are the silent celiacs.  

@Dora77, I started taking 10,000 IU vitamin D3 around March 2015.

I also am taking 250 mg Thiamine one to three times a day..

In September 2019 it was still only at 47 ng/ml.  It was another two years before I reached 80 ng/ml and has stayed between 80 and 93 since.  Last May it was 93 going into the spring with lots of sun exposure so I took a break from them to see what happens.  In my July tests it had dropped down to 74 ng/ml so obviously I started taking it again,  I expect to get back to 80 in my October tests.  I noticed over the years if I don't take it my mood drops, and I get withdrawn and even stop reading emails and avoid going out.

Liquid D3 may even absorb better because it is already disolved. Mine is one pill of 10,000. When I started I was taking 10 1000 IU pills.  Swallowing a bunch of pills plus the B1,B3,B5,B12,Choline,and liquid Magnesium Citrate  every morning was a pain.  My iodine is Liquid Iodine at 50 mcg per drop, so I just squirt 10 drops into my coffee or Red Bull 1 to 3 times a day.  Labs stayed the same but I an healing faster now and getting better hair, nails, skin, and muscle tone.  I even got my brother, son, daughter in law and her parents to start taking the vitamin D and iodine and they say it helps.  Her father is a kidney transplant patient and his tests are improving since starting.  Click the link and read the Mayo Clinic article.  It is full of information about vitamin D.

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 Mayo Clinic Procedings: Vitamin D Is Not as Toxic as Was Once Thought:

Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and sup pressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al. recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL.

I drink about a liter of whole milk a day.  If it is not causing you distress continue on because it is a great source of potassium, calcium, magnesium and phosphorus, needed for bones, that is hard to get without milk. U.S. Department of Agriculture Food Data Central Whole Milk Nutrients

1 hour ago, knitty kitty said:

Mucosal reactivity to cow's milk protein in coeliac disease

"CM has a high nutritional value and is one of the most commonly consumed foods worldwide. Nevertheless, adverse reactions to CM are frequently reported and are attributed mainly to lactase deficiency or allergy to CM proteins" 

That's what fermented foods are for, the lactobacillus (probiotic) supplies us with lactose.  The quick pickles and sauerkraut, made with vinegar, we buy in the US supermarkets give us the taste but not the health benefits of real fermented foods. Find a good pickle barrel source or make your own.

Choline is important to bile because it keeps it from getting too thick and causing gallbladder problems. Choline is a also a major part of acetycholine (nerve transmission) and mitochondrial (the body's energy factories) membranes.       Biliary Lecithin Secretion. II. Effects of Dietary Choline and Biliary Lecithin Synthesis " "with each increment in dietary choline, biliary lecithin as well as cholesterol secretion rates were significantly increased. "

A blood test for Homocysteine can indicate your vitimin status for choline, B6, folate, B12 and cardiovascular inflammation.

You are not alone in this. Cant stop burping since having baby!! advice please

Thiamine deficiency can cause gas. Gastrointestinal Beriberi.

You might find these studies interesting.

Anti-Gliadin Antibodies Identify Celiac Patients Overlooked by Tissue Transglutaminase Antibodies 

"5 of 26 patients (20%) with biopsy-proven celiac disease during our specified period had a positive AGA IgA or IgG and a negative tTG... The most significant finding in our study was the identification of five patients with biopsy confirmed celiac disease that had negative tTG but positive AGAs."

Thiamine deficiency in pregnancy and lactation: implications and present perspectives

Hello @Dora77,

         It seems you are doing well on your gluten free diet other than a few glitches.  

21 hours ago, Dora77 said:

I expierence floating, light brown and undigested stools since 3 months, which points malabsorption (Do you think its from celiac even though I am asymptomatic)

As @trents said, this and even your anxiety level  both are symptoms of your Celiac Disease and malabsorption.  Are you overexagerating?  I don't think so.  It is good that you are aware, but don't let it get in the way of life.

Your diet already has probiotics.  Bifidobacterium  is found in yoghurt and milk products.  Another probiotic, Lactobacillus is found in fermented pickles and sauerkraut and other naturally fermented foods.  Lactobacillus in our gut secretes lactase to help us digest the lactose in milk. In the US we buy Quick Pickles, made with vinegar instead of fermentation and so we have an epidemic of Lactose Intolerance. So, Good Job!

Naturally Fermented Pickles [The Complete Guide]  for Lactobacillus probiotic.

The three fortifications to your diete I think will help your symptoms the most:

1. Choline: it helps form the bile we need to digest the fats; instead of finding the in the toilet.  Eggs, meat, poultry, fish the main dietary sources.  You can purchase phosphatidyl choline in pill form if it is hard to eat enough.  In the US the recommended dietary intake is at least 500 mg a day.  Equivalent to 4 eggs a day.  It is estimated that 90% of people in western societies do not even get that much.  Fifty years ago our medical and pharmaceutical leaders decided that for cholesterol control we should avoid eggs and red meat, milk and fat in general.  Since then our cholesterol is still high unless we take statins, and in the US our population went from 15% obese in 1970 to 50% today.  What is wrong with this picture?  Fat satisfies hunger.  Without fat we eat more carbohydrates, and that makes us obese.

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De novo choline synthesis in humans is not sufficient to meet metabolic needs; therefore, choline intake from the diet is necessary. Good dietary sources of choline include eggs, meat, poultry, fish, cruciferous vegetables, peanuts, and dairy products. Choline: Linus Pauling Institute » Micronutrient Information Center

 

     2.  In 1950 the UK and most of the world banned vitamin D because of a manufacturing error in baby formula.  1980s: Sunscreens became "broad spectrum" to filter both UVA and UVB rays. Those two choices have increase vitamin D deficiency to more than 40% of our populations.  Vitamin D is essential to control autoimmune diseases, like Celiac Disease and for our mental health.  Vitamin D is affected by malabsorption because the oral kind we take to compensate for avoiding sun is not absorbed well in a Celiacs small intestine.  I live in Florida and to keep my blood vitamin D 25-Hydroxy Vitamin D level at 200 nmol/L (or 80 ng/ml in the US labs measurement, and the natural level for someone who gets enough sunshine) I have to take 250 mcg (10,000 IU) daily.  I recommend you get tested.  A survey of lifeguard in Haifa found that their blood levels of 25-Hydroxy Vitamin D ranged from 70 to 90 ng/ml. (about 200 nmol/L). All in good health. Raising your vitamin D will be good for your anxiety and help moderate your Celiac Disease.

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"Estimates of the yearly increases in the overall worldwide incidence and prevalence of autoimmune diseases are 19.1%...  Comparing various autoimmune diseases, celiac disease increased the most."  The Increasing Prevalence of Autoimmunity and Autoimmune Diseases: An Urgent Call to Action for Improved Understanding, Diagnosis, Treatment and Prevention 

    3.  Iodine.  In the EU, a 2020 Thyroid study found that median standardized urinary iodine concentration (UIC) was below 100 µg/L in 6.3% of studies in schoolchildren, 53.8% of studies in adults, and 63.6% of studies in pregnant women. 

On 9/10/2024 at 3:30 PM, Dora77 said:

fluctuating low t4 levels (but normal tsh).

Iodine is an essential component of the thyroid hormones thyroxine (T4) and triiodothyronine (T3). Low iodine intake can have normal TSH but not enough for all the needs of your body. Around 300-500 mcg a day should help your T4.  Iodine Fact Sheet for Health Professionals

21 hours ago, Dora77 said:

Almost everywhere is flour, even in the salad.

Scary, right?  Not to worry, but good to be vigilant.

Regarding your pepper question. Are you using ground pepper?  As trents said it probably is not enough, but try whole peppercorns in a pepper grinder.  You could even rinse and dry the peppercorns before usling.

I get the Canyon Heritage Style Wholegrain sometimes the Honeywhite. Their heritage style is about the size and texture of rye bread.  Keep it in the freezer and nuke two slices for a minute then cool on a wood cutting board.  Good for roast beef, ham and swiss and hamburgers.

No, the increase in antibodies is due to gluten, but the excema may be caused on of the symptoms of Celiac. Plus low vitamin D.  Could be one of the symptoms of gluten intolerance not usually recognized as a gluten problem.

From the article above What Are the Symptoms of Celiac Disease?

Conditions Associated with Celiac Disease:

• Skin Problems—acne, eczema, dermatitis herpetiformis, dry skin 

If you are done testing the probiotic would be a good idea again since they help.  The high carb, inflammatory western diet tends to kill off the good guys.

To @jayjays,

Take vitamin D for the night terrors, Thiamine for the neuralogic, and Choline for the gut dybiosis and brain fog, Red Bull for the energy.  

I do think his recearch is important,  he is looking for a non Gluten Challange way to diagnose Celiac Disease.

Wonder where this research went:

38 minutes ago, Layu said:

In general, in my laboratory it is written that antigliadin increases not only in celiac disease, but also in urticaria, cirrhosis, atopic dermatitis, and even in healthy people.

     Chronic urticaria: A cutaneous manifestation of celiac disease  The immunoglobulin G autoantibody binds to the immunoglobulin E receptor and causes mast cell degranulation resulting in urticaria.  

     Antigliadin antibody classes in chronic liver disease  In conclusion, these results indicate that AGA (either IgG and IgA) can be present at low titre in chronic liver disease and their presence may be secondary to the liver damage per sè. High titres of AGA in chronic liver disease may suggest a real association with coeliac disease.

     Serum IgG antibodies to gliadin and other dietary antigens in adults with atopic eczema  30·4% of atopic eczema patients had detectable IgG antibodies reactive with gliadin in contrast to 6·5% of the controls. These findings suggest that antigen absorption from the gut may play a role in the aetiopathogencsis of atopic eczema, and lend some support for the use of elimination diets in this condition.

There are many, myself included, who were considered healthy who had symptoms that were considered normal and those symptoms disappeared with gluten free diet or have no symptoms. There is a real thing called Silent Celiac.

Just a guess here, but I think your might still have some of those probiotics still living in your gut and they are keeping your diarrhea in check but sometimes get overwhelmed.

So, having another diagnosis does not mean high antiglobulin G is irrelevant.   I mentioned previously a study that showed that 20% of a group of people with normal EMA but high AGA who would not have been biopsied because of the belief the EMA is a definitive not celiac as your doctors believe, were diagnosed Celiac Disease by biopsy.

I don't know if Non Celiac Gluten Sensitivity is recognized by you medical system.  It became a real disease in the US in 1980.  Curiously only ten years after Norman Borlaug recieved the Nobel Prize for creating the modern wheat of the Green Revolution.

1 hour ago, Layu said:

diarrhea is not peculiar to celiac disease

Classic arbitrary dismissal of your illness.  In the meantime do they have an answer of what is causing it?  Many of us were dismissed similarly, It is in your head, psycological, caused by stress, and rolled eyes.

Wheat has become synonomous with Bread: The Staff of Life and so is sacrosant.  Also everyone is addicted to it.

Check out this list of symptoms

During this entire discusssion of the immune system there was no refefernce to the fact that vitamim D regulates T cells 

Quote

Vitamin D3 may induce tolerogenic dendritic cells that may in turn stimulate IL-10 producing CD4+ T-cells and antigen-specific Tregs [12]. High levels of 1,25(OH)2D can induce the lineage-specific FOXP3 transcription factor involved in the development and function of Tregs [13, 14] and so enhance the number and/or function of circulating CD4+ Tregs that have a number of anti-inflammatory functions [12, 15–17]. High levels of 1,25(OH)2D have been associated with anti-inflammatory lymphoid polarisation including a high proportion of Tregs [18]. Tregs induced or stimulated by vitamin D3 may play a role in controlling allo- and auto- immune T cell responses by releasing or expressing inhibitory cytokines such as IL-10 [19, 20] and TGF-beta [21], through release of granzymes and perforin [21] or via expression of inhibitory co-receptors such as CTLA-4 to prevent antigen presentation and initiation of the pro-inflammatory response [14]. There is therefore considerable animal or in vitro experimental evidence the vitamin D3 may indirectly or indirectly increase the numbers or function of Tregs.  The role of vitamin D in increasing circulating T regulatory cell numbers and modulating T regulatory cell phenotypes in patients with inflammatory disease or in healthy volunteers: A systematic review

Quote

Vitamin D can modulate the innate and adaptive immune responses. Deficiency in vitamin D is associated with increased autoimmunity as well as an increased susceptibility to infection. As immune cells in autoimmune diseases are responsive to the ameliorative effects of vitamin D, the beneficial effects of supplementing vitamin D deficient individuals with autoimmune disease may extend beyond the effects on bone and calcium homeostasis. Vitamin D and the Immune System

Yes, does not matter.  Anti-gliadin IgG is an antibody that detects the body's reaction to gluten.  You can have other things going on, but bottom line is you have an abnormal immune system reaction to gluten.   Remove it from your life.  Some have withdrawal for up to 10  days, and thats depressing.  It is due to the strong effect of gluten on the opiod receptors.  It is very addictive.  In fact, most of the western world is addicted to it.  Many of your symptoms will improve.  But gluten sensitivity causes vitamin and mineral deficiency through diet choices and in celiac desease through malabsorption.  These deficiencies have symptoms.  

You are very likely deficient in vitamin D.  Atopic dermatitis results from an overactive immune system that causes the skin barrier to become dry and itchy.  Vitamin D controls the immune system.  In the winter our vitamin D is lowest unless taking extra.   Have they tested you for vitamin D?  In the US, Canada, Ireland, UK over 40% of the adult population is deficient.

Elevated levels of Anti-Gliadin IgG might mean that your body is reacting to gluten. This can happen when your immune system is more sensitive to gluten, which could be a sign of non-celiac gluten sensitivity (NCGS).  In the US 10% of the population are diagnosed NCGS while only 1% are diagnosed Celiac Disease. 

"5 of 26 patients (20%) with biopsy-proven celiac disease during our specified period had a positive AGA IgA or IgG and a negative tTG." Anti-Gliadin Antibodies Identify Celiac Patients Overlooked by Tissue Transglutaminase Antibodies

In my non medical opinion, while your tests don't completely rule out Celiac disease it does indicate a high chance of Non Celiac Gluten Sensitivity.  A biopsy would be required to rule out Celiac Disease.  Many have posted that they test negative for blood test, but were eventually confirmed to have Celiac by a biopsy, some took 10 years to finally be diagnosed. The tTG-IgA test has a sensitivity of 78% to 100% and the EMA-IgA test has a sensitivity of 86% to 100%.  So there is room for the doctors to be wrong.  Since you do better on gluten free diet, it is likely one of the two.  Both require gluten free diet for your health.