Feeling sick all the time ?

[Liam R]

Hi all 

So i was DX with celiac in May 2021 via blood test and endoscopy antibody level was 69 i had another blood test May 2022 and antibody levels are down to 6, the Dr says this is good and proves i am on the right track with my diet.

I am male 37 years old UK

What i currently eat.......

Potatoes rice meat veg (basisc diet)

I am totally gluten-free DF and avoid Oats & Soy as well.

As we all know the diet adjustment is hard and mistakes are inevitable but i am generally doing well a year into the diet ( I think ).

I dont have physical pain around my abdominal area anymore, the fluttering stopped after i quit dairy, the brain fog has reduced but still not 100% gone.

The baseline now for me is waking up with what i can only explain as a sick feeling, its worse as soon as i wake up in morning and gradually reduces throughout the day 

Does anyone have experience with this symptom ? Am i missing something as i think i am very strict with my food but still seem to be suffering,

I am feeling quite alone on this journey as i dont know anyone else with celiac to talk to to ask the questions i need answering,

All my research is done via Google and forums etc like celiac.com 👍 

I am very worried its something else !

 

Appreciate any feed back and if anyone is in south yorkshire UK i would love to chat 

Thanks 

[trents]

Liam, are you taking any gluten-free vitamins and supplements? We generally recommend this as celiac disease typically creates nutrient deficiencies. B-complex, D3 and magnesium are typically recommended.

It seems to take about two years for adults to experience complete villi recovery after going truly gluten-free.

Also, there could be some additional food intolerances besides dairy and oats and gluten. Have you had an ALCAT food sensitivity panel done?

Congratulations, by the way on the discipline you have exhibited to this point and the progress you have made.

[Liam R]

2 minutes ago, trents said:

Liam, are you taking any gluten-free vitamins and supplements? We generally recommend this as celiac disease typically creates nutrient deficiencies. B-complex, D3 and magnesium are typically recommended.

It seems to take about two years for adults to experience complete villi recovery after going truly gluten-free.

Also, there could be some additional food intolerances besides dairy and oats and gluten. Have you had an ALCAT food sensitivity panel done?

Congratulations, by the way on the discipline you have exhibited to this point and the progress you have made.

Hi Trents 👋 

Only just started taking B12 gluten-free tablets and a a vit juice called natralia ultra about a week ago, i have increased my fruit intake over the last 3 months also and have been eating bananas since my DX.

Is the ALCAT food panel via Drs service as i have been thinking about a food allergy test but cant seem to find any that i trust as some of the reviews put me off but if anyone can recommend somewhere from the forum i will definitely look into it.

2 years..... I keep seeing this timescale alot it just gets me down that i may have to endure another 12 months of this if I am lucky, i just havnt seen an improvement lately and feel like i have plateaued 

 

Thanks for your praise 👏 and reply.

 

 

 

[trents]

6 minutes ago, Liam R said:

Hi Trents 👋 

Only just started taking B12 gluten-free tablets and a a vit juice called natralia ultra about a week ago, i have increased my fruit intake over the last 3 months also and have been eating bananas since my DX.

Is the ALCAT food panel via Drs service as i have been thinking about a food allergy test but cant seem to find any that i trust as some of the reviews put me off but if anyone can recommend somewhere from the forum i will definitely look into it.

2 years..... I keep seeing this timescale alot it just gets me down that i may have to endure another 12 months of this if I am lucky, i just havnt seen an improvement lately and feel like i have plateaued 

 

Thanks for your praise 👏 and reply.

 

 

 

I think it would be wise to add in a gluten-free B-complex as the B vitamins act together as a group. If you are deficient in one you are likely deficient in others. Also magnesium and D3 are good. I can't speak for the UK healthcare system as to whether or not they would cover ALCAT. Food sensitivity tests can be helpful and provide guidance but they should not be taken as definitive in every detail of the results. They can sometimes turn out false positives and they always need to be compared to what you actually experience. The results can often turn up dozens of sensitivities that can result in feeling overwhelmed: "What can I eat?" But the important thing to keep in mind is focusing on the food items with the strongest reactivity. Keeping a food diary can also be helpful in uncovering food sensitivities. 

[Wheatwacked]

Like fatigue and irritability, nausea and vomiting can be nonspecific symptoms of many conditions, including thiamine deficiency.

This is because most dietary sources of B1 (fortified grains, beef liver, pork, dried milk, eggs, legumes, peas, nuts, and seeds) are omitted on grain-free healing diets,

Thiamine deficiency has been deemed as a rare deficiency in the developed world, but this is due to the fortification of cereals and bread. If you’re on a grain-free diet, you are very likely going to be deficient in thiamine.

Unfortunately, standard lab tests for thiamine deficiency will not show if someone is mildly deficient — they only screen for severe deficiencies.

[knitty kitty]

You may want to rethink the potatoes.  

Potatoes contain glycoalkaloids that promote leaky gut syndrome.

Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/12479649/

 

[Russ H]

21 hours ago, Liam R said:

Only just started taking B12 gluten-free tablets and a a vit juice called natralia ultra about a week ago, i have increased my fruit intake over the last 3 months also and have been eating bananas since my DX.

Liam,

According to NICE guidelines, if you have persistent symptoms, you should be investigated for deficiencies by blood testing:

Quote

Assess for nutritional deficiencies and whether iron, folic acid, calcium, and/or vitamin D supplementation is needed

https://cks.nice.org.uk/topics/coeliac-disease/management/management-of-confirmed-coeliac-disease/

I would show that to your GP and get checked out.

[Liam R]

On 6/2/2022 at 5:51 PM, Liam R said:

Hi all 

So i was DX with celiac in May 2021 via blood test and endoscopy antibody level was 69 i had another blood test May 2022 and antibody levels are down to 6, the Dr says this is good and proves i am on the right track with my diet.

I am male 37 years old UK

What i currently eat.......

Potatoes rice meat veg (basisc diet)

I am totally gluten-free DF and avoid Oats & Soy as well.

As we all know the diet adjustment is hard and mistakes are inevitable but i am generally doing well a year into the diet ( I think ).

I dont have physical pain around my abdominal area anymore, the fluttering stopped after i quit dairy, the brain fog has reduced but still not 100% gone.

The baseline now for me is waking up with what i can only explain as a sick feeling, its worse as soon as i wake up in morning and gradually reduces throughout the day 

Does anyone have experience with this symptom ? Am i missing something as i think i am very strict with my food but still seem to be suffering,

I am feeling quite alone on this journey as i dont know anyone else with celiac to talk to to ask the questions i need answering,

All my research is done via Google and forums etc like celiac.com 👍 

I am very worried its something else !

 

Appreciate any feed back and if anyone is in south yorkshire UK i would love to chat 

Thanks 

Really appreciate the advice peeps,

 

Russ314, i will definitely be pushing for an investigation into vit deficiencies on my next appointment to the Drs in a few days

As i do feel from the advice you have all given that maybe this is now the avenue i need to go down, i really thought that my current diet would suffice its obvious i seem to be lacking !

I ordered and now received my gluten-free B complex,  magnesium and D3 so lets see how this goes 😅 

Ive done some reaserch into the thiamine topic  and what can i say ..... "interesting"

Well onwards with the learning curve as everyday is a school day so they say,

Ill keep you posted soon 

Thanks 

[Kate333]

Hi Liam.  I so recognize and empathize with your feeling alone and being so overwhelmed, sad after first diagnosis!  Same here.  But as you can see, this is a great online support resource of folks who have been down the same road who can help you navigate and learn the ropes as you adapt to gluten-free diet and begin to heal.

The good news is you are very young when diagnosed and your gluten antibody test level returned to the normal range after only one year, so hopefully the damage done was minimal and should completely heal more quickly than folks with decades of gluten exposure before diagnosis.  I was over 50 & my TTG was 224.   It took me 2 years to get my TTG level down to normal.  I was also diagnosed right before the Covid pandemic so, of course, having to deal with pandemic fear & celiac disease simultaneously only magnified my stress, life disruption....:-(. 

Regarding your morning nausea, I assume you aren't pregnant, so we can rule out morning sickness???? (Sorry, forgive the sarcasm, humor!)   But nausea can also be a physical symptom of chronic, severe stress, understandable with a new diagnosis with a life-changing autoimmune disease like celiac disease which requires big dietary/lifestyle changes.  I found the website anxietycentre.com very informative/helpful as it describes in detail the many ways in which chronic, extreme stress affect the body through physical symptoms, including GI discomfort, nausea, pain, digestion upset.  You might also consider asking your primary doc for a referral for short-term counseling and/or anti-anxiety meds.   It is so important to address BOTH physical and mental health stressors and healing on your recovery journey.

Best of luck, and I hope you feel better soon!

[Wheatwacked]

Lose the rice it's a nutritional black hole, add cottage cheese and ripe bananas and see what happens. These plateaus will come and go. Some times it feels like its 1 step forward and 2 back.

Even though I know I was getting 300% B1, when I did the trial at 2000 mg for two weeks there was a significant improvement in my peripheral neurapathy. Bananas make my belly happy.

On 6/2/2022 at 12:51 PM, Liam R said:

Potatoes rice meat veg

Thiamin deficiency (causing beriberi and other problems) is most common among people whose diet mainly consists of white rice or highly processed carbohydrates in developing countries and among alcoholics. Thiamin Deficiency - Merck Manual

"While 600 mg is a good daily starting dosage, you may need to increase your dosage if your weight is above 60 kg   Here is a guide for finding your correct dosage, based on the researchers’ finding in the study above:"

[C4Celiac]

On 6/2/2022 at 11:14 PM, knitty kitty said:

You may want to rethink the potatoes.  

Potatoes contain glycoalkaloids that promote leaky gut syndrome.

Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/12479649/

 

 

If I stopped eating potatoes I'd be walking around stick thin. I only started gaining weight again by eating Potatoes every day.

In fact.. i'm about to eat some for Lunch now in a few minutes 😝

 

[LCAnacortes]

I live near Seattle Washington USA and our climate is similar to the UK.  One of my early symptoms was really low vitamin D levels. I started supplementing that before I realized that I probably have celiac.  I have not been diagnosed officially - but it runs heavily in my family - several cousins have either been diagnosed or have the DNA marker for it. I have a lot of symptoms and just stopped eating gluten a month ago.  Anyway - once I started taking vitamin D3 I had more energy and generally felt better.  A lab tech said those of us that live in northern climates can take 5000 IU without any problem.  Be sure your vitamins are also gluten free. I read in several posts here that it takes a long time to heal so hang in there.  There are lots of us still struggling. Best of luck on your journey. 

[Wheatwacked]

21 minutes ago, LCAnacortes said:

in northern climates can take 5000 IU without any problem.

I live in Florida, have been taking 10,000 a day since 2015 and my plasma D is holding steady at 80 ng/ml but took 5 years to get to that level, tested in 2018 at 47 ng/ml. My son a lifeguard here tested low <29 ng/ml. He was diagnosed as an infant in 1976, I was in denial until 2014. Hypervitaminosis D is rare, while low D and autoimmune disease is common.

Vitamin D Is Not as Toxic as Was Once Thought ; Mayo Clinic Proceedings  "The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years)."

[Wheatwacked]

Potatos are great to raise potassium (100%DV = 4700 mg).

200 Grams of boiled peeled potato without added salt:

Potasium to sodium ratio = 65:1 (Heart Healthy is >2:1). I read in an article on ancient nutrition that our ancestors were typically 9:1.

Of a 2000 kCal diet 200 grams of potato has: 9% Calories, 6% protein, 12% fiber, 2% sugar, 8% iron, 10% magnesium, 11% Phosphorus, 14% Potassium, 2% Sodium, 37% copper, 12% Mangenese, 12% vitamin C, 16% Thiamin, 3% Riboflavin, 16% Niacin, 20% Pantothenic Acid (B5), 32% Biotin (B6), 5% Folate, 5% Choline, 4% vitamin K. NIH Nutritional Database SR27.

100 gm potato: 328 mg potassium, 5 mg sodium

100 gm whole wheat bread: 250 mg potassium, 450 mg sodium Bread, whole-wheat, commercially prepared (oop! that's almost twice as much sodium as potassium.) Whole wheat bread is heart healthy?

Potatoes can make up the vitamins lost by not eating fortified wheat products. Someone should research the effect of not eating potatoes on Bone density because clearly supplemental D and Calcium is more of a placebo.

Even potato chips (Lays brand) with all the bad hype about too much sodium has a 2:1 potassium:sodium ratio. And the US government has retracted the misinformation it fed us for 30 years about fat. A low fat diet is not healthy. In San Franscisco a few years ago a trial was run comparing a low fat DASH diet to a full fat DASH diet. The full fat was healthier. Study Finds Higher Fat Variation of DASH Diet Beneficial

The Nutritional Value of Potatoes

 

 

 

 

[Rogol72]

@Liam R,

I'm not in Yorkshire but Ireland, 12 years on this journey. I've had terrible brain fog and recovered from it, all down to nutritional deficiencies, additional food sensitivities and histamine overload. Hats off to you for hitting the ground running post diagnosis! I would ditch the rice and potatoes as Wheatwhacked and Knitty Kitty said.

It might be worth your while to listen to Dr. Robert Pastore's podcast on Coeliac Disease and Brain Health. He's a fellow Coeliac with DH and highly respected PHd Clinical Nutritionist who works with top Coeliac specialists in the US. He goes into great detail about celiac disease, Nutrition and Brain Health. Just search for "The Pastore Podcast" on Spotify ... I'd paste the link but for some reason, it's disabled by the system automatically.

 

With regard to gluten-free supplements, I've been caught out enough of times to question the manufacturer's before purchasing supplements. Labelling legislation is not fit for purpose regarding Gluten in my opinion. I've found https://www.biocare.co.uk/ to be excellent, and https://www.nutriadvanced.co.uk/ are very good also. As an added bonus, the in house clinical nutritionists at both companies are very helpful.

Check out https://bant.org.uk ... you may be able to find a nutritionist in your area.

Some functional medical practitioners use the following food sensitivity test, I avoid most items on this list as they don't agree with me.

https://www.joincyrex.com/the-cyrex-system/array-4-gluten-associated-cross-reactive-foods-foods-sensitivity

Never stop learning and never give up! You will feel a lot better soon.

[Liam R]

UPDATE.........

So initial results from yesterdays endoscopy was, 2cm hiatus hernia wich has reduced from 6cm last year, 

Small intestine looks healthy and healing seems to have taken place ( villi )

Bile and mild gastritis were found, i had mild gastritis on last scope but not the bile,

Apparently bile shouldn't be found in the stomach and only after the pyloric valve which could be the cause ( weak valve ) bile reflux/washback, i havnt done a lot of research on this yet but i have read that stomach acid reflux and bile reflux can be hard to differentiate, but he did say the morning sickness definitely fits the bile washback during sleep whilst lating down and no food in the stomach.

Any way this all has to be confirmed from the biopsies test results.

The scope Dr did mention they only did the simple test for H.pylori last time but this time they are going to do the more detailed test, agian never herd of this 

So has anyone had issues with gastritis like symptoms and bile reflux ? 

Any tips 

 

Thanks 😊 

 

[Wheatwacked]

"The reason for this is that Choline is great for thinning bile and getting these salts to break up areas of congested tissue all throughout the body. The plaque you see in these disease’s is the result of the congested material getting stuck and then drying out." https://www.panaceanutritionals.com/blog/2018/10/27/choline-the-most-important-nutrient-of-the-body

In the western diet only about 10% of us eat enough Choline. Eggs and meat are the best source and someone around 50 years ago decided that they are bad. They promoted more carbs and less fat and protein in our diets was better. I think it backfired.

[trents]

17 minutes ago, Wheatwacked said:

"The reason for this is that Choline is great for thinning bile and getting these salts to break up areas of congested tissue all throughout the body. The plaque you see in these disease’s is the result of the congested material getting stuck and then drying out." https://www.panaceanutritionals.com/blog/2018/10/27/choline-the-most-important-nutrient-of-the-body

In the western diet only about 10% of us eat enough Choline. Eggs and meat are the best source and someone around 50 years ago decided that they are bad. They promoted more carbs and less fat and protein in our diets was better. I think it backfired.

I think you're right.

[Rogol72]

On 6/16/2022 at 5:39 AM, Liam R said:

UPDATE.........

So initial results from yesterdays endoscopy was, 2cm hiatus hernia wich has reduced from 6cm last year, 

Small intestine looks healthy and healing seems to have taken place ( villi )

Bile and mild gastritis were found, i had mild gastritis on last scope but not the bile,

Apparently bile shouldn't be found in the stomach and only after the pyloric valve which could be the cause ( weak valve ) bile reflux/washback, i havnt done a lot of research on this yet but i have read that stomach acid reflux and bile reflux can be hard to differentiate, but he did say the morning sickness definitely fits the bile washback during sleep whilst lating down and no food in the stomach.

Any way this all has to be confirmed from the biopsies test results.

The scope Dr did mention they only did the simple test for H.pylori last time but this time they are going to do the more detailed test, agian never herd of this 

So has anyone had issues with gastritis like symptoms and bile reflux ? 

Any tips 

 

Thanks 😊 

 

I'm curious, did they say how or why the hiatus hernia reduced from 6cm to 2cm? I 'm asking because I have a HH also.

[Liam R]

2 minutes ago, Rogol72 said:

I'm curious, did they say how or why the hiatus hernia reduced from 6cm to 2cm? I 'm asking because I have a HH also.

Hi Rogol72, i didnt ask at the time as it was right after the endoscopy but will try and remember to ask when i have my follow up for the biopsy results with my Gastro Dr,

My guess would be that i no longer eat massive carb heavy meals anyomore like i used to do, i used to be a very big eater and ever since being a child was brought up to eat all of the food on my plate, as i got older i could eat very very large meals and eat them  very very quickly too, i have since tried to change this behaviour, the nurse did say HH are very very common and that every patient on that particular day who had the same procedure as me had a HH, mine doesnt seem to bother me, not that im aware of anyway and i dont know what complications there are from having a HH

I put it down to being a greedy git who loved food 😋 

 

Thanks 

[Wheatwacked]

The hernias are a result of excess pressure in the gut. For example, in 2014 I was lying in bed, smoking a cigarette when I coughed and a bubble popped up in my belly button. It was one of the final factors to start GFD. In 2019 Lisinopril BP med, caused a persitant cough and one day up popped an ingiunal hernia. The prostate surgeon pointed it out but he wasn't concerned. He just wanted to do a biopsy, which by the way will never happen because at 71 my prostate is smaller and bothers me less than it was when I was 21.  So it depends on the weak spot in your abdominal muscles and how bloated you get. I understand pregnancy is a risk factor, and I read somewhere that hernia repair is one of the most performed surgeries.

@Liam R Not that you loved food, just the wrong foods as you were raised to value.

[trents]

1 hour ago, Wheatwacked said:

The hernias are a result of excess pressure in the gut. For example, in 2014 I was lying in bed, smoking a cigarette when I coughed and a bubble popped up in my belly button. It was one of the final factors to start GFD. In 2019 Lisinopril BP med, caused a persitant cough and one day up popped an ingiunal hernia. The prostate surgeon pointed it out but he wasn't concerned. He just wanted to do a biopsy, which by the way will never happen because at 71 my prostate is smaller and bothers me less than it was when I was 21.  So it depends on the weak spot in your abdominal muscles and how bloated you get. I understand pregnancy is a risk factor, and I read somewhere that hernia repair is one of the most performed surgeries.

@Liam R Not that you loved food, just the wrong foods as you were raised to value.

Wheatwacked, I think the discussion was about hiatal hernias, not abdominal wall hernias.

[Wheatwacked]

They all are a result of too much pressure in the gastrointestinal tube pressing on a weak muscle area. A giant burp with nowhere to go. Different names for different location.

1. A hiatal hernia occurs when the upper part of your stomach bulges through the large muscle separating your abdomen and chest (diaphragm)
2. An umbilical hernia creates a soft swelling or bulge near the navel. It occurs when part of the intestine protrudes through the umbilical opening in the abdominal muscles.
3. Inguinal hernias occur because of a weakening of the muscles in the lower abdomen.
4. Gerd. a sour or bitter-tasting acid backing up into your throat or mouth. Another surgical procedure called a fundoplication can help prevent further acid reflux. It creates an artificial valve using the top of your stomach. 

[trents]

14 minutes ago, Wheatwacked said:

They all are a result of too much pressure in the gastrointestinal tube pressing on a weak muscle area. A giant burp with nowhere to go. Different names for different location.

1. A hiatal hernia occurs when the upper part of your stomach bulges through the large muscle separating your abdomen and chest (diaphragm)
2. An umbilical hernia creates a soft swelling or bulge near the navel. It occurs when part of the intestine protrudes through the umbilical opening in the abdominal muscles.
3. Inguinal hernias occur because of a weakening of the muscles in the lower abdomen.
4. Gerd. a sour or bitter-tasting acid backing up into your throat or mouth. Another surgical procedure called a fundoplication can help prevent further acid reflux. It creates an artificial valve using the top of your stomach. 

This is true.

[LCAnacortes]

12 hours ago, Wheatwacked said:

The hernias are a result of excess pressure in the gut. For example, in 2014 I was lying in bed, smoking a cigarette when I coughed and a bubble popped up in my belly button. It was one of the final factors to start GFD. In 2019 Lisinopril BP med, caused a persitant cough and one day up popped an ingiunal hernia. The prostate surgeon pointed it out but he wasn't concerned. He just wanted to do a biopsy, which by the way will never happen because at 71 my prostate is smaller and bothers me less than it was when I was 21.  So it depends on the weak spot in your abdominal muscles and how bloated you get. I understand pregnancy is a risk factor, and I read somewhere that hernia repair is one of the most performed surgeries.

@Liam R Not that you loved food, just the wrong foods as you were raised to value.

My daughter had an MRI and they saw a bubble in her system.  I had a colonoscopy and it was super uncomfortable when they got all of the way up there - so was wondering if I have/had a bubble too.  Could that be caused by gluten? An interesting thought