Undiagnosed NCGS - Advice and opinions on symptoms appreciated

[trents]

" Gluten is a protein found in wheat, barley, rye and triticale (a cross between wheat and rye)." https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gluten-free-diet/art-20048530#:~:text=Gluten is a protein found,cross between wheat and rye).

[Suzisqueue]

30 minutes ago, trents said:

" Gluten is a protein found in wheat, barley, rye and triticale (a cross between wheat and rye)." https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gluten-free-diet/art-20048530#:~:text=Gluten is a protein found,cross between wheat and rye).

I just follow the instruction of my Mayo Clinic Endocrinologist - this guy here.  Alireza Falahati, MD, Endocrinolgy. https://www.utendocrinology.com/provider/alireza-falahati-md-face 

I trust his opinion far more than yours because my life depends on it, if you want to fight out with him, give him a call.

https://www.utendocrinology.com/provider/alireza-falahati-md-face 

https://www.glutenfreesociety.org/dangers-eating-rice-gluten-free-diet/

[trents]

From Dr. Alireza own words according to the last link you provide: "Did you know that oftentimes people will purchase rice thinking that they are eating well?  Even though rice is considered gluten-free based on the definition set forth by the FDA, rice does contain a form of gluten prolamin called orzenin.   In my experience, those with known celiac disease or non celiac gluten sensitivity issues always do better when avoiding rice."

A "form of gluten" is not the gluten that causes reactions for most celiacs and his extension of the term "gluten" in that way is a questionable journalistic tactic. Most medical researchers don't share his perspective on that. Most of us have no problem with those other grains. If eliminating them from your own diet has constituted a turn around in your health we rejoice with you. But please don't project your own anecdotal experience onto everyone else in the community. We have enough limitations on what we can eat already without needlessly eliminating other grains that don't do harm to most of us. Otherwise I have no problem with you sharing your own experience but it needs to be presented in that light rather than as a general prescription for all.

And all that stuff about the dangers of arsenic poisoning from eating rice is way over blown. If you research it thoroughly, it's mostly a theory that has little real life evidence to support it. And if there is any, it's only likely connected to riced grown in areas where the soil is high in arsenic to begin with or where they use fertilizer that is high in arsenic. And even then you have to eat copious quantities of it in order to get arsenic poisoning. What are the chances that you would consistently be eating rice grown in one area unless you lived there and it was eaten regularly?

[MrsTurner]

I have been eating rice regularly since starting my gluten-free diet and not experienced any symptoms as a result. Not sure what else I would eat if I had to knock rice off the list too! 

[Suzisqueue]

52 minutes ago, trents said:

From Dr. Alireza own words according to the last link you provide: "Did you know that oftentimes people will purchase rice thinking that they are eating well?  Even though rice is considered gluten-free based on the definition set forth by the FDA, rice does contain a form of gluten prolamin called orzenin.   In my experience, those with known celiac disease or non celiac gluten sensitivity issues always do better when avoiding rice."

A "form of gluten" is not the gluten that causes reactions for most celiacs and his extension of the term "gluten" in that way is a questionable journalistic tactic. Most medical researchers don't share his perspective on that. Most of us have no problem with those other grains. If eliminating them from your own diet has constituted a turn around in your health we rejoice with you. But please don't project your own anecdotal experience onto everyone else in the community. We have enough limitations on what we can eat already without needlessly eliminating other grains that don't do harm to most of us. Otherwise I have no problem with you sharing your own experience but it needs to be presented in that light rather than as a general prescription for all.

And all that stuff about the dangers of arsenic poisoning from eating rice is way over blown. If you research it thoroughly, it's mostly a theory that has little real life evidence to support it. And if there is any, it's only likely connected to riced grown in areas where the soil is high in arsenic to begin with or where they use fertilizer that is high in arsenic. And even then you have to eat copious quantities of it in order to get arsenic poisoning. What are the chances that you would consistently be eating rice grown in one area unless you lived there and it was eaten regularly?

I always say, 'take what you like, and leave the rest', I only know my own experience and obviously this is'nt any safe place for me. Sorry to have all upset you.

 

 

[Suzisqueue]

3 hours ago, Suzisqueue said:

I just follow the instruction of my Mayo Clinic Endocrinologist - this guy here.  Alireza Falahati, MD, Endocrinolgy. https://www.utendocrinology.com/provider/alireza-falahati-md-face 

I trust his opinion far more than yours because my life depends on it, if you want to fight out with him, give him a call.

https://www.utendocrinology.com/provider/alireza-falahati-md-face 

https://www.glutenfreesociety.org/dangers-eating-rice-gluten-free-diet/

Eh, I'll go share about autism, sometimes people will listen to me rather than being a cruel shaming jerk.

[MrsTurner]

39 minutes ago, Suzisqueue said:

I always say, 'take what you like, and leave the rest', I only know my own experience and obviously this is'nt any safe place for me. Sorry to have all upset you.

 

 

I'm sorry you feel that way. Of course you know your own experience and nobody can say they know your experience better. I think the point was just being made that not everyone will have that same experience with rice and oats, for example. By saying they both contain gluten, which isn't quite right, it puts more fear and pressure on people already under a lot of pressure. I'm sorry that some other foods also give you symptoms and I hope you are able to manage it and feel as well as you can. Thank you for your reply. 

[trents]

1 hour ago, Suzisqueue said:

Eh, I'll go share about autism, sometimes people will listen to me rather than being a cruel shaming jerk.

No one wants you to leave. You are welcome here as long as you don't try to pass fringe concepts as gospel truth in a dogmatic, authoritarian way. Please realize that there are many who join this forum who are new to the celiac disease/Gluten sensitive world. They don't know enough yet to be able to evaluate the validity of information they may find here. The claims you made in your previous post are at odds with the mainstream science of the celiac disease/Gluten sensitive world and you should expect them to be challenged. I have tried to do this in a respectful way but if I have failed in that I owe you a sincere apology. 

Edited July 13, 2022 by trents

[Wheatwacked]

Quote

 

Rice is gluten-free in its natural form. Not all boxed rice mixes, however, are gluten-free. Gluten is present in flavored rice mixes such as:

• Instant rice
• Rice pilaf
• Sushi rice

Flavored rice mixes may contain thickeners and sauces that have wheat gluten. And if the rice comes into contact with gluten-containing grains such as barley, rye, or wheat when harvesting, processing, or packing, the rice can become cross-contaminated.   https://www.medicinenet.com/what_rice_isnt_gluten-free/article.htm

 

Consumption of large quantities of Rice can interferes with Thiamine. That's why the Japanese came up with Benfotiamine.

In order to meet nutritional needs after milling many grains are fortified with synthetic vitamins like folic acid. How can that be good? But if you like it and does not bother you, food is good.

 

 

 

[knitty kitty]

Arsenic binds with Thiamine Vitamin B1.  

Arsenic binds with Thiamine making that thiamine unavailable for the body to use.  

Arsenic can bind so much Thiamine that Arsenic can precipitate a Thiamine deficiency.  

If you eat rice, make sure you take thiamine, whether from food sources like meat and liver or from supplements like thiamine hydrochloride and allithiamine and benfotiamine.

Thiamine deficiency can cause seizures.

Thiamine has been shown to be beneficial for people with autism.  

 

[MrsTurner]

An update for anyone who may be interested...

So I wasn't diagnosed with Celiac or NCGS. I tested negative for Celiac and did a self imposed gluten-free diet as I thought there was a connection. I just reached 6 weeks on my gluten-free diet. After a bit of withdrawal in week one, I then noticed some initial improvements in my symptoms, but then a plateau and many symptoms were still there.

Went back to the GP for some very comprehensive vitamin and mineral deficiency panels as well as some autoimmune blood tests. All came back completely normal, along with everything else I've been tested for (a lot!). GP has basically advised that I stop researching and testing and looking for answers. He believes my symptoms are psychosomatic and centred around anxiety.

I started to lose any faith that it was related to gluten (and had reached a stage of feeling depressed about this new and stressful way of life that hadn't even been confirmed) so I started eating gluten again on Monday. Monday, Tuesday and Wednesday I felt absolutely the same as I had whilst being on the gluten-free diet - this was enough to convince my husband that it's all in my head. But today I have woken up and feel completely sick to my stomach and the dizziness has returned. I've had to take the day off work, my fingers are also so swollen that my rings don't fit (these were all symptoms initially which seemed to get better). Coincidence? 

Serves me right I suppose. I know 6 weeks was too soon to see a real difference, but I'm so conflicted by the different information and advice and opinions and I'd convinced myself that my NCGS self diagnosis was wrong because I wasn't magically better on a gluten-free diet.

Thoughts, guidance, slaps on the wrist and "I told you so's" welcome.

[trents]

Give it about three months next time before you reach a conclusion.

Have you been checked for heavy metal toxicity?

[knitty kitty]

@MrsTurner,

It's not all in your head!  When doctors don't know they blame the patient.  You know your body better than anyone.  Do keep looking for answers!

There's many reasons why some people don't test positive on blood tests like the iga ttg.  Ask for a genetic test.  Celiac Disease is genetic, your genes won't change if you're gluten free, so no gluten challenge required.  The most common Celiac genes are HLA DQ2 and DQ8.  There are other Celiac genes that are more rare, but at least you'll find out if you are genetically susceptible.

Again, tests for vitamin deficiencies are not an accurate measurement of vitamin levels within the tissues.  Our bodies will take vitamins from the tissues and put them in the blood to supply the brain.  There are no blood tests at all for certain vitamins like riboflavin.  Blood tests can reflect how much of a vitamin has been consumed in the previous twenty-four to forty eight hours.  Vitamin supplements will reflect the vitamin supplementation, not how much has been absorbed and is being used.

Be aware that gluten containing products are required to be enriched with vitamins lost in processing.  Food manufacturers use cheap, shelf stable vitamin forms that are not bioavailable -- our bodies cannot use them properly.  Since starting the gluten free diet, we cut out this source of vitamins.  While our intestines are healing and can absorb properly on their own, supplementing with the eight essential B vitamins and minerals like magnesium, zinc, and iron, and Vitamin D, C, and A can be beneficial.  

Best wishes.

[sunflowers]

On 6/26/2022 at 6:15 AM, MrsTurner said:

Hi Russ, Thank you.  I had Tissue transglutaminase IgA level which came back as <0.5 U/mL. GP said it would have to be over 15.0 to be positive for Coeliac.  I did read that there were other tests that can be done but he said we don't do those tests routinely in the UK and the investigation would end there.

Hi there, I know others already mentioned this, but there are other blood tests for celiac disease. I am in the US and I recently tested positive for celiac but only on the DGP TtG test. Waiting for my endoscopy now. That being said, I'm sorry that you're experiencing all these symptoms. It really sucks to feel invalidated by doctors when we know something is wrong. I've dealt with that my whole life too. Keep advocating for yourself! 👏 You know yourself best. 

[sunflowers]

So sorry, I just saw your update... Ignore my previous reply lol 🙈

This is not in your head! I know how discouraging it feels right now. I've gone through the same thing with doctors blaming my symptoms on stress, anxiety, depression, even my period when I just know it's something else. I'm not sure how finding doctors works in the UK, or if you're in the position to, but when I felt invalidated by a doctor I would go to a different one to get a second opinion and a fresh set of eyes on my situation/symptoms. It sounds like you're going to the same GP, maybe it's time to find a new one if you can? 

[KDL]

On 6/26/2022 at 7:20 AM, MrsTurner said:

Hello, newbie here!

Apologies in advance for the longest post ever but I'm at my wits end and wanted to get some opinions - if anyone has the time to read and respond, I'd be so grateful!

I've been feeling not quite myself for about 2 years, but in particular I've felt increasingly unwell in the last 4-5 months or so. GPs must be sick of me but they've suggested a number of things which haven't worked and they are just scratching their heads now, so I'm hoping some advice on here may be more helpful.

I've researched lots and came to the conclusion that I may have an issue with gluten. I've tested negative for Coeliac , but I feel there is still something going on, and so I'm now on day 5 of a cold turkey gluten-free diet.  I appreciate it is early days to be making solid conclusions.

Symptoms I've had for a while in no particular order:

• Nausea
• Dizziness
• Light-headedness
• Jittery/shaky/ caffeinated feeling (only on the inside - no visible shakes)
• Brain fog
• Joint pain particularly in elbows, knees, fingers, top of spine, neck when turning head to right - no recollection of injury, just seems to come on.
• Poor concentration/hard time understanding and focusing
• Vague abdominal pains/aches/discomforts/ tenderness which don't seem to be constant or stay in the same place - they feel muscular/ skin level rather than deeper inside
• Rib pain when in certain positions/ribs tender to touch (the lower down ribs under breasts)
• Feeling the need to wee more often and don't always feel like I'm really finished when I go (No pain - doesn't feel like cystitis)
• Fatigue
• Lower resting heart rate (Gone from mid/high 70s to high 50s/ low 60s in a number of months)
• Pins and needs in hands and sometimes feet - was diagnosed with Carpal Tunnel and De Quervains in 2021 after Nerve Conduction study
• Heavy menstrual periods - Have had Transvaginal US, Pelvic Xray & Pelvic MRI and there was nothing of note - no visible endometriosis or cysts.
• Recently periods have become more irregular - weeks late or early, no variation in length
• Chest pain/discomfort
• Shortness of breath (This is hard to explain. I am breathing fine, but I feel like I can't catch a full breath. I try yawning regularly to get enough air to satisfy and then the feeling comes back)
• Chest and throat fluttering but heart rate stays the same
• Earache/ pounding in left ear
• Ear pressure/crackling/popping in both ears - need to use Valsalva manoeuvre and Otovent balloon to pop and relieve pressure, which builds up again.  This is usually after eating but can also happen randomly.
• Tinnitus and pulsatile tinnitus - hearing buzzing, ringing heart beating and whooshing in head.
• Migraine with visual aura - both with and without headache
• Occasional vertigo when moving head - have tried Epley manoeuvre for BPPV which didn't change anything
• Loss of balance and coordination
• Clumsiness - walking into things/dropping things
• Occasional tight throat/feeling something is stuck in throat/trouble swallowing
• Felt at one point like I was struggling for words and slurring speech (terrified this was a stroke but GP checked out ok on that front)
• Loss of appetite
• Belching
• Bloating
• Lots of very smelly wind
• Occasional twitches in abdomen
• Constipation with mucous. Deep pain in rectum and lower abdomen just before relieving myself of particularly bad constipation. This pain disappears immediately after BM.
• Night sweats and vivid dreams - rare occurrences
• Sore throat regularly
• Always sniffly/runny nose

Many of these are still present.  Some seem to be improving slightly since going gluten-free, although in the past I seem to have had good days without many symptoms, and then things get worse again, so it feels too early to tell.

 

New symptoms in the last 5 days since going gluten free:

• Extreme hunger, especially for carbs - sometimes makes me feel sick I'm that hungry, but might have eaten only 2/3 hours ago
• Headache
• Feeling a bit weird and lightheaded within 30 minutes after eating - no patterns, even just eating potato or vegetables can bring this on.
• Dizziness and light-headedness when standing - been regularly checking blood pressure at home and its always normal
• Periods of extreme fatigue/nodding off

 

Other things that may be of note:

• 33 Y/O female
• Had a baby in 2020 and feel my health has gotten worse since then.
• Had Covid in January 2022. Still suffered from POTS for a month after testing negative
• Don't drink alcohol
• Don't smoke
• Don't have any caffeine
• Not pregnant
• Try to eat a varied and healthy diet and move as much as my body allows
• Could do with losing around a stone to be optimal healthy weight - can't seem to lose it, despite being in a calorie deficit. 

 

Recently had blood tests for:

• Urea & electrolytes - NA, K, urea, creatinine, GFR - all within normal ranges
• Coeliac - negative
• Thyroid serum TSH  - within normal range
• Diabetes  HbA1c  - within normal range
• B12  - within normal range
• Folate - within normal range
• Full blood count - all within normal ranges
• Serum ferritin (iron) : borderline low at 10ug/l (GP wasn't concerned about this. However I have started taking OTC iron supplements anyway)
• Have had a number of A&E visits which led to bloods and ECGs  for heart - all came back clean. They put chest pains and shortness of breath down to anxiety (sigh), which I don't really agree with.

 

So given all this I'm wondering whether others agree my symptoms could be related to Gluten? Has anyone experienced the same or similar? Does it sound like something else? Could my current worsening of some symptoms be due to gluten withdrawal? I feel that some of my current symptoms look to be related to blood sugar and hypoglycaemia, but since I haven't suffered from those before and my diabetes blood test came back normal, I didn't know whether this could just be common during gluten withdrawal. Or maybe related to the borderline low Iron?

 Any feedback or advice would be amazing.  GP is aware of all these symptoms BTW but can't come to any conclusions and not sending me for any urgent tests. They won't even put me in for my next appointment until the middle of next month as they don't think it's 

Although I don't have any words of wisdom I definitely feel your frustration and have delt with MANY of the symptoms you have talked about.  I got a lot better when I took gluten out of my diet. Maybe you are still getting gluten from cross contamination.  

If you haven't joined a gluten-free group on Facebook I suggest you do. My group has helped me more than anything! Best wishes!