The symptoms of a newly diagnosed celiac

[Mell2]

I am officially a Celiac now and I want to share my food and symptom story as no physician seems to understand anything I describe. I was an undiagnosed Celiac for quite a few years therefore quite a bit of damage to my intestinal tract. For reference to other new Celiacs here is a list of symptoms I had that every physician seemed to be unfamiliar with but many here would know or some other symptoms that perhaps few people have. Sorry if it's too much information but only trying to help others by sharing.

• proctalgia fugax - which was absolutely the worst of all the symptoms
• Constant rectal pain/ache - and had to sit on a hot pack most of the time to make it bearable
• iron deficiency with a slowly declining hemoglobin - not important to physicians since I was not below normal...yet
• extreme nausea and the constant sensation of wanting to vomit - I was told I had heartburn and was put on a proton pump inhibitor - pantoloc.  I did get heartburn occasionally.
• difficulty defecating - as it felt like I had hemorrhoids and was told I had hemorrhoids but in fact that is not what it was. Instead there is new evidence to suggest an increase in anal sphincter pressure that actually looks and feels like rectal prolapse in addition to what looked like little blisters. Yes, I got a mirror and looked and it was swollen and purple all the way around. It was not nice and that is not what hemorrhoids look like. It is now very slowly getting better.
• Elevated calprotectin - this is a marker of inflammation in the gut and is more specific to diseases like Crohn's. My doctor told me that Celiac did not affect the large intestine as well and told me I could eat wheat. He was wrong. I had a colonoscopy and I did not have Crohn's or ulcerative colitis. I did not have blood in my stool. An elevated calprotectin is indicative of Celiac.
• Eczema like patches - not dermatitis herpetiformis. just regular scaly eczema around my chin and mouth. it wasn't itchy just sore.
• Skin changes - my face always felt scaly and dry. I thought it was aging but now i'm noticing an improvement. Smoother.
• Hair loss - my hair was thinning and I thought it was age related. Also improving a bit now.
• Small changes in bloodwork that normally would go unnoticed improved following removal of gluten in my diet. My creatinine (kidney) has decreased (improved). My C-reactive protein has gone down (marker of inflammation).
• my arthritis has improved dramatically since changing my diet. Before I couldn't bike. I can now. I'm rather thrilled but I miss cake and cookies.

Impacts on diet:

• cut out gluten first
• then more hidden gluten
• discovered I couldn't eat gluten free products such cereals, crackers, etc. Still not sure if i'm too sensitive or perhaps I'm sensitive to corn.
• cut out all grains except rice - more improvement in symptoms
• Discovered bacon was a huge problem despite being labelled gluten free, organic, grain fed, etc. not sure if it's what pigs eat but gives me proctalgia fugax which is too painful to bear. 
• became lactose intolerant - about 5 months after making drastic diet changes
• basically eat simple foods now such as meat, fruit, veggies. Anything too processed gives me weird symptoms like others have mentioned here.

Hoping with some healing I will get to eat more things again but shocked at how restricted my diet is now.

I have no clue how many people have shared information like this before, but I guess i'll add to the list and hope it helps someone. So many physicians know so little and it seems those with Celiac need to help and reassure others who may also have it and have unexplained symptoms.

[cyclinglady]

Wow!  Thank you for sharing.  Your post will surely bring comfort to another celiac.  
 

Glad you are back on your bike!  🚴‍♀️

[DJFL77I]

not everything is caused by celiac

[Mell2]

3 hours ago, DJFL77I said:

not everything is caused by celiac

No of course not, but I have an extensive medical background and have researched this topic quite a bit. I'm confident that based on timeline, evidence, bloodwork, etc that these symptoms were caused by Celiac. Symptoms also matched what my brother went through. I agree though, that each issue needs to be investigated and other diagnoses ruled out before jumping to any conclusions.

[knitty kitty]

Mell2,

Have you been checked for vitamin and mineral deficiencies?  I experienced many vitamin and mineral deficiencies before being properly diagnosed as a Celiac.  Damage to the small intestine causes malabsorption problems which result in nutritional deficiencies.  

The eczema-like facial rash around the nose and mouth (and even perianal blisters) are manifestations of riboflavin deficiency. Riboflavin, biotin, and thiamine deficiencies will also cause your hair to fall out.  Dry scaly skin can be caused by Vitamin C and Vitamin A deficiencies and Omega-3 fats deficiency.  I had all of these.  

The feelings of nausea and impending vomiting is thiamine deficiency, which also messes with digestive juice secretion and can cause hypersecretion and acid reflux, or hypochlorhydria.  I was given PPIs, too, but thiamine supplementation corrected my acid reflux.

Thiamine is needed to process carbohydrates into energy which can manifest as carbohydrate intolerance.  That may be why you have trouble with gluten free crackers.  Thiamine is also needed to make insulin.  Type two diabetics like me have a higher metabolic need for thiamine.  Until I started supplementing with high dose thiamine, I could not tolerate any carbohydrates.  

The anal pain may be related to muscle cramps and magnesium deficiency, as well as thiamine deficiency, and resulting in nerve dysfunction.

The improvement in creatinine and c reactive protein is also related to improved thiamine status.  

Correcting Vitamin D deficiency helped with my arthritis and mobility issues.

Lactose intolerance is frequently due to destruction of the tips of the villi being damaged and unable to produce lactase, the enzyme needed to digest dairy.  Yours might grow back, like Cycling Lady's did and you may be able to consume dairy again.  I'm allergic, so no dairy for me.

The Paleo diet (meat and veggies and no grains) is very helpful in reducing inflammation and promoting healing and better absorption of vitamins, minerals and nutrients.  

I had good results on the Autoimmune Paleo diet, but I was severely deficient in vitamins and minerals and chose to supplement with high dose thiamine and the other eight B vitamins, fat soluble vitamins, as well as minerals like magnesium, iron and trace minerals.

https://www.hormonesmatter.com/navigating-thiamine-supplements/

Hope this helps!

Glad to see you're improving!

 

[kazordoon]

On 9/3/2020 at 2:52 PM, Mell2 said:

I am officially a Celiac now and I want to share my food and symptom story as no physician seems to understand anything I describe. I was an undiagnosed Celiac for quite a few years therefore quite a bit of damage to my intestinal tract. For reference to other new Celiacs here is a list of symptoms I had that every physician seemed to be unfamiliar with but many here would know or some other symptoms that perhaps few people have. Sorry if it's too much information but only trying to help others by sharing.

• proctalgia fugax - which was absolutely the worst of all the symptoms
• Constant rectal pain/ache - and had to sit on a hot pack most of the time to make it bearable
• iron deficiency with a slowly declining hemoglobin - not important to physicians since I was not below normal...yet
• extreme nausea and the constant sensation of wanting to vomit - I was told I had heartburn and was put on a proton pump inhibitor - pantoloc.  I did get heartburn occasionally.
• difficulty defecating - as it felt like I had hemorrhoids and was told I had hemorrhoids but in fact that is not what it was. Instead there is new evidence to suggest an increase in anal sphincter pressure that actually looks and feels like rectal prolapse in addition to what looked like little blisters. Yes, I got a mirror and looked and it was swollen and purple all the way around. It was not nice and that is not what hemorrhoids look like. It is now very slowly getting better.
• Elevated calprotectin - this is a marker of inflammation in the gut and is more specific to diseases like Crohn's. My doctor told me that Celiac did not affect the large intestine as well and told me I could eat wheat. He was wrong. I had a colonoscopy and I did not have Crohn's or ulcerative colitis. I did not have blood in my stool. An elevated calprotectin is indicative of Celiac.
• Eczema like patches - not dermatitis herpetiformis. just regular scaly eczema around my chin and mouth. it wasn't itchy just sore.
• Skin changes - my face always felt scaly and dry. I thought it was aging but now i'm noticing an improvement. Smoother.
• Hair loss - my hair was thinning and I thought it was age related. Also improving a bit now.
• Small changes in bloodwork that normally would go unnoticed improved following removal of gluten in my diet. My creatinine (kidney) has decreased (improved). My C-reactive protein has gone down (marker of inflammation).
• my arthritis has improved dramatically since changing my diet. Before I couldn't bike. I can now. I'm rather thrilled but I miss cake and cookies.

Impacts on diet:

• cut out gluten first
• then more hidden gluten
• discovered I couldn't eat gluten free products such cereals, crackers, etc. Still not sure if i'm too sensitive or perhaps I'm sensitive to corn.
• cut out all grains except rice - more improvement in symptoms
• Discovered bacon was a huge problem despite being labelled gluten free, organic, grain fed, etc. not sure if it's what pigs eat but gives me proctalgia fugax which is too painful to bear. 
• became lactose intolerant - about 5 months after making drastic diet changes
• basically eat simple foods now such as meat, fruit, veggies. Anything too processed gives me weird symptoms like others have mentioned here.

Hoping with some healing I will get to eat more things again but shocked at how restricted my diet is now.

I have no clue how many people have shared information like this before, but I guess i'll add to the list and hope it helps someone. So many physicians know so little and it seems those with Celiac need to help and reassure others who may also have it and have unexplained symptoms.

Thanks for your detailed message. I have not been officcially diagnosed, but I have the feeling I'm Celiac.

My  symptoms are,  very soft puffy stools, that caused what you described as rectal prolapse. I, too, thought it was hemorrhoids, but I might be wrong. It got better once I stopped eating cereals because I thought it could be the milk, since I thought I could be lactose intolerant. but I didn't think it could be the cereals. I didn't know celiac was a thing. The prolapse persists after I stopped eating cereals, but not as bad as before.

Because of my bowel movement problems, I went to my doctor, who took a stools sample checking for blood, and even though I don't see blood when I wipe, they found blood in my stools sample, and I was sent for a colonoscopy on Wednesday this week. I was terrified, since I thought I could have colon cancer, but they didn't find cancer. However, they found I had diverticulosis which might have been caused by my poor diet and/or gluten intolerance ?

They also made a blood test, and found I was low on vitamin D and folic acid.

I also suffer from the face skin problems you mention. Patches of scaly dry skin on my face.

Also I suffer from arthritis like symptoms in my hip (caused maybe by vitamin D defficiency ? )

After reading your message, I think I could be coeliac. I'm going to try the diet you suggest, meat, vegetables and fuit and see how it goes.

[lanlanonearth]

Hello, I have been gluten free for less than a month after finding out that my son is wheat intolerant (I have two other posts talking about that). I myself is generally healthy without noticeable medical problems, so I became gluten free simply out of 1) curiosity 2) don't want to cross contaminate my son's food.

I've been noticing something very strange these days and I think it could relate to what you experience. I started to notice that I felt weird (tired, spacy) after eating a lot of stuff, and I tracked those down. I found that I was reacting to grains that were not properly prepared and fruits that were not fully ripen when they are picked. Yeah, I know, crazy!

I started to 1) soak pseudo grains (buckwheat) with 1:48 (vinegar to water) solution over night before cooking them 2) soak beans with same solution for 24 hours and slow cook with a 1:300 (vinegar to total weight of beans and water) ratio until mushy soft 3) sprout true grains (millet, brown rice) before eating them 4) avoid not fully ripen fruits (pretty much all fruits from the market and also tomato sauce, chili sauce etc) and eat hard skinned fruits (softened oranges, watermelon) only occasionally.

And I don't experience those weird sensations (they also come as allergic symptoms like stuffed nose)! Tried so many times and it just happens every time! I wonder if I am getting my animal instinct back after going gluten free because my body is truly telling me to avoid what plants and mother nature don't want me to eat---not fully ripen fruit and not sprouted grains. There are protective mechanisms that plants build into their seeds and fruits so that they can pass their genes on with assurance.

Root vegetables do not give me these reactions because I believe they don't need the protective mechanism of fruits and seeds. Though I found that I digest root vegetables better if eaten with generous amount of fat. Also, bananas are the only fruit that do not give me any reaction because it does not reproduce by seedling. I don't have the luxury to eat a fully ripen juicy fallen-off-the-ground fruit as nature intended at the moment, and it would be interesting to test my assumption out when I do get the chance.