Symptoms

[Bro90]

I’ve been sick for the past 6/7 months with stomach cramps at the bottom of my ribs, in between them. The best way to describe them is a wave then squeeze and it can keep me up all night. I’ve also had heartburn and indigestion almost constantly, even without food - it’s there. Ive had some bloating where my stomach goes rock hard and I look pregnant when this happens. As well as this nausea. I’ve not had any bowl issues except for one day where I was in agony all night but I put that down to having spicy food after cutting it out months previous due to doctors orders, to have no acidic food, spicy or alcohol.

another weird thing, Ives found exercise really hard, I get cramps in my stomach after a few minutes.

I’ve had blood tests, tried heartburn remedies, IBS things, had an ultrasound found had no issues. My doctor is now concerned it may be Celiac, this is the first I’ve heard of it. The main symptom is diarrhea which I don’t have, can you have celiac without that symptom?  

[Scott Adams]

I agree with your doctor and your symptoms sound very typical of celiac disease symptoms. Be sure to keep eating gluten daily until all of your testing is completed, otherwise you may end up with false negative results. Also many celiacs don’t have any symptoms so the fact that you do have classic symptoms definitely means you should get a blood screening for it. This link has the standard protocol testing so you may want to show it to your doctor: 

 

[Mandz]

Hi, I am similar to the initial post, back in June 2020 started with  digestive / stomach issues. Was tested for helicobacter pylori.. was positive..got ppi’s and and antibiotics.. still had issues… got different course of meds… they didn’t work ..eventually got put for an endoscopy in sept  this year to take biopsies.. (they were still convinced it was helicobacter) .. results 5 weeks later was negative for helicobacter but no mention of any other findings. So they then suggested coeliac disease. Did not tell me to continue with gluten, and I stopped it..for about 7 days.. I could feel a start to relief. But saw on here I needed gluten in my system for an accurate result. So now have to eat x2 gluten daily for blood tests in January. 
my symptoms are  all day non stop severe bloating,a fuzzy feeling in stomach,  (below my ribs)a cramping/ tight feeling and if my tummy is flipping upside down/ sideways. Indigestion, severe flatulence, headaches, fatigue, and apathy..I have no motivation for anything I used to enjoy, and anxiety. No diarrhoea as such , but soft fluffy bowel movements . 
im not sure I can cope eating food until January as the pain and discomfort is increasing and usually worse after eating a meal . Does it sound familiar to coeliac disease symptoms? 

[Scott Adams]

Welcome to the forum @Mandz. Your symptoms definitely sound consistent with celiac disease. Is there any way you could get your doctor to do your blood test sooner? 

I fully understand how you feel, but keep in mind that once you go gluten-free you can’t be tested for celiac disease.

[Mandz]

Cannot get a test sooner, getting GP or nurse appointments right now are 3-4 weeks from calling surgery, it’s terrible hence suffering so long 🤦‍♀️ I’ll do my best to persevere but omg it’s going to be difficult . I am convinced it’s coeliac or an intolerance .

[trents]

1 hour ago, Scott Adams said:

Welcome to the forum @Mandz. Your symptoms definitely sound consistent with celiac disease. Is there any way you could get your doctor to do your blood test sooner? 

I fully understand how you feel, but keep in mind that once you go gluten-free you can be tested for celiac disease.

Scott, I think you have a typo here and meant to say "one you go gluten-free you cannot be tested for celiac disease."

[KKMom]

I was diagnosed with celiac a couple weeks ago.I have felt  sick for a long time.The nausea ,fatigue, weight loss ,anxiety,depression and just feel strange overall. I am going to see a dietician on Tuesday. So I understand the feeling of not enjoying anything and just feeling sick.I have always been very active and  at 64 I could run circles around most people.l just feel unsteady and just weird and shaky. How long does it take to feel better? I have stopped eating gluten.

[trents]

Welcome to the forum, KKmom!

You should start feeling better soon if you are truly avoiding gluten but complete healing of the small bowel villi often takes around 2 years. Studies show that most people who believe they are eating gluten free are really practicing a lower gluten diet. Chief among the risk scenarios seems to be eating out. Mostly, it's because they aren't aware of the ways gluten is hidden in the food supply and they aren't careful about CC (cross contamination). There is actually more of a learning curve than most beginners realize. This may help:

 

Edited April 24, 2022 by trents

[Scott Adams]

On 12/3/2021 at 4:00 PM, trents said:

Scott, I think you have a typo here and meant to say "one you go gluten-free you cannot be tested for celiac disease."

Once you go GF…

[knitty kitty]

@KKMom,

Welcome to the forum!  

So sorry you feel poorly.  It's good that you are seeing a dietician soon.  

Gluten can act as an opioid.  Once gluten free, you can feel really run through the wringer.   While you're healing, you may benefit from eating easy to digest foods, soups and stews.  You might find dairy causes problems.  Some of us suffer lactose intolerance and find the undigested lactose is fermented by intestinal bacteria causing bloating, gas, and diarrhea.  Some of us develop a reaction to a protein in dairy, casein.  Casein can sometimes cause a reaction like gluten does.  Our bodies can confuse casein and gluten because they have similar shapes.  Eating Dairy Free is beneficial in the early months of healing.  Going grain free may be beneficial as well.

I've found going on the Autoimmune Protocol diet very helpful.  The AIP diet was developed by a doctor (Dr. Sarah Ballantyne) with Celiac and Celiac children.  Her book is called"The Paleo Approach."  It's been scientifically proven to help reduce inflammation and promote healing in the intestines.  

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

And...

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

Hope this helps!  Keep us posted on your progress!

[KKMom]

Thank you for all of the information on dairy and the Paleo Approach and more.I have not eaten any gluten for nine days now and still feel really bad. I am not eating much at all.My bloodwork came back good concerning vitamins. I am trying to be positive and will do what I need to do to feel good again but what is funny is I can’t really remember when I felt good

[knitty kitty]

Doctors routinely check only Vitamins D and B12.  Because these are exceptional vitamins in that they can be stored for years in the liver, testing for only these two vitamins don't accurately reflect deficiencies in the other vitamins. 

Blood work doesn't reflect actual vitamin levels inside tissues and organs where vitamins are actually used. 

Many vitamin deficiency symptoms can appear BEFORE deficiency symptoms appear in the blood. 

The eight essential B vitamins are water soluble and easily lost with diarrhea and vomiting.  They cannot be stored for very long in the body, so we need to consume them every day.  We need more of them when we're sick or under emotional and physical stress.  

Thiamine, Vitamin B1, can occur in as little as nine days.  Every cell in our bodies utilize Thiamine for energy and enzymes.  

Our bodies will confiscate vitamins from our tissues and organs in order to keep a constant level in the bloodstream to supply important organs like the brain and heart while the tissues and organs go without.    

A gluten free B Complex will ensure that our bodies get the vitamins we need.  Celiac Disease damages the small intestine where vitamins are usually absorbed.  Supplementing in the early stages of healing provides what our bodies need.  

Keep in mind that gluten containing products are required by law to be enriched with vitamins lost in processing.  Another way to say this is...Wheat products have vitamins supplements added to them! Since cutting gluten out of your diet, you are no longer getting these vitamin supplements.

Do discuss supplementation with your doctor or nutritionist.  

Hope you feel better soon.  Keep us posted on your progress.

P.S. these symptoms you mentioned are symptoms of vitamin deficiencies....

"nausea, fatigue, weight loss, anxiety, depression and just feel strange overall"

The earliest symptoms of Thiamine deficiency is nausea, fatigue, anxiety, weight loss and depression.  These are symptoms I had, too, when I was trying to recover.  As a microbiologist, I recognized them before my doctors did.  

Edited April 25, 2022 by knitty kitty
Added post script

[KKMom]

57 minutes ago, knitty kitty said:

Doctors routinely check only Vitamins D and B12.  Because these are exceptional vitamins in that they can be stored for years in the liver, testing for only these two vitamins don't accurately reflect deficiencies in the other vitamins. 

Blood work doesn't reflect actual vitamin levels inside tissues and organs where vitamins are actually used. 

Many vitamin deficiency symptoms can appear BEFORE deficiency symptoms appear in the blood. 

The eight essential B vitamins are water soluble and easily lost with diarrhea and vomiting.  They cannot be stored for very long in the body, so we need to consume them every day.  We need more of them when we're sick or under emotional and physical stress.  

Thiamine, Vitamin B1, can occur in as little as nine days.  Every cell in our bodies utilize Thiamine for energy and enzymes.  

Our bodies will confiscate vitamins from our tissues and organs in order to keep a constant level in the bloodstream to supply important organs like the brain and heart while the tissues and organs go without.    

A gluten free B Complex will ensure that our bodies get the vitamins we need.  Celiac Disease damages the small intestine where vitamins are usually absorbed.  Supplementing in the early stages of healing provides what our bodies need.  

Keep in mind that gluten containing products are required by law to be enriched with vitamins lost in processing.  Another way to say this is...Wheat products have vitamins supplements added to them! Since cutting gluten out of your diet, you are no longer getting these vitamin supplements.

Do discuss supplementation with your doctor or nutritionist.  

Hope you feel better soon.  Keep us posted on your progress.

P.S. these symptoms you mentioned are symptoms of vitamin deficiencies....

"nausea, fatigue, weight loss, anxiety, depression and just feel strange overall"

The earliest symptoms of Thiamine deficiency is nausea, fatigue, anxiety, weight loss and depression.  These are symptoms I had, too, when I was trying to recover.  As a microbiologist, I recognized them before my doctors did.  

 

57 minutes ago, knitty kitty said:

Doctors routinely check only Vitamins D and B12.  Because these are exceptional vitamins in that they can be stored for years in the liver, testing for only these two vitamins don't accurately reflect deficiencies in the other vitamins. 

Blood work doesn't reflect actual vitamin levels inside tissues and organs where vitamins are actually used. 

Many vitamin deficiency symptoms can appear BEFORE deficiency symptoms appear in the blood. 

The eight essential B vitamins are water soluble and easily lost with diarrhea and vomiting.  They cannot be stored for very long in the body, so we need to consume them every day.  We need more of them when we're sick or under emotional and physical stress.  

Thiamine, Vitamin B1, can occur in as little as nine days.  Every cell in our bodies utilize Thiamine for energy and enzymes.  

Our bodies will confiscate vitamins from our tissues and organs in order to keep a constant level in the bloodstream to supply important organs like the brain and heart while the tissues and organs go without.    

A gluten free B Complex will ensure that our bodies get the vitamins we need.  Celiac Disease damages the small intestine where vitamins are usually absorbed.  Supplementing in the early stages of healing provides what our bodies need.  

Keep in mind that gluten containing products are required by law to be enriched with vitamins lost in processing.  Another way to say this is...Wheat products have vitamins supplements added to them! Since cutting gluten out of your diet, you are no longer getting these vitamin supplements.

Do discuss supplementation with your doctor or nutritionist.  

Hope you feel better soon.  Keep us posted on your progress.

P.S. these symptoms you mentioned are symptoms of vitamin deficiencies....

"nausea, fatigue, weight loss, anxiety, depression and just feel strange overall"

The earliest symptoms of Thiamine deficiency is nausea, fatigue, anxiety, weight loss and depression.  These are symptoms I had, too, when I was trying to recover.  As a microbiologist, I recognized them before my doctors did.  

Thanks again.I also should mention I have had IBS for over 30 years and IC for many years and hip joint bursitis. It seems my joint issues are bad right now also. I am going to see a rheumatologist in May.My GI doctor is great and will discuss all of your information with him.I have no doubt my vitamins are off.You are so helpful and kind and I feel like finally someone is understanding what I am feeling.Last summer when I was in the emergency room so sick they did blood work and said it was all normal and gave me chips and cookies.They said if I could eat I could go home. Well I ate alittle and went home still sick,what a journey!

[knitty kitty]

The World Health Organization (WHO) has a field test for Thiamine deficiency.  If a person cannot rise from a squat, thiamine deficiency is probable.  If one has difficulty rising from a squat, there is likely a thiamine insufficiency.  Thiamine is given (300-1500 mg/day).  If health improvements are seen, a diagnosis of Thiamine deficiency is made.  Thiamine is given for several months.  

 

[knitty kitty]

@KKMom,

I've had ER doctors elbowing each other in the ribs, rolling their eyes and saying "What a hypochondriac!" 

One doctor agreed to check my Vitamin D level only after he had double checked that my insurance would cover it.  He was stunned by the test results, saying "Dead people have higher levels than that!"  And yet he refused to test any other vitamins or minerals saying, "I can't make money prescribing vitamins!" and stormed out of the exam room.  

Yes, I understand completely.  I've written more of my experiences (and research articles) in a thread I'll link below.  

Oh, healthy fats, Omega 3 threes should help with your joint pain.

I'm glad you found a home here.