Extreme Pain and struggling

[Mads98]

Hi, I’m new here as I’m really struggling at the moment and haven’t really been able to find any answers.

I have been diagnosed with Coeliac for 9 years now. It wasn’t a massively hard transition for me as my grandma has it so I knew about the diet already. I find following the diet not really a problem and am very strict and cautious.

last year my friend accidentally fed me her normal sandwich, I was petrified when we realised and tried to make myself sick up immediately to get it out of me but couldn’t make myself sick… but an hour later I was uncontrollably vomiting till no more bile could come out and feeling very faint for quite a few hours. It was horrendous mainly because I was at a music festival without any home comforts… the pain was awful.

A few months later a falafel got me and again the same thing happened. So I start to understand just how sensitive I am to being glutened and my food anxiety is through the roof. I am so so careful and very nervous eating out in new restaurants or at a friends. 

This past year I have been into hospital 3 times with acute abdominal pains with sadly no explanation from doctors but you have very bad IBS or it’s your Coeliac with also no suggestions to managing the pain. 

The other night I did not sleep a wink, after 12 hours of pain and cramps (which I originally thought was IBS) the pain got so bad I was vomiting, and ended up again in hospital. I blew up like a balloon and felt like all the rumblings of diarrhoea but I couldn’t pass wind or go to the toilet. I was trembling in agony and really quite scared. 

 I have wracked my brain and am certain that I didn’t eat anything with gluten in it, I ate home cooked meals so I’m now down too, am I so sensitive this is the reaction to small cross contamination? 

I am wondering if anyone else experienced anything like this as I feel super let down by the doctors at the moment with no suggestions of pain relief or support. My main concern is that this is unrelated to my IBS or Coeliac and there is another issue… 

[trents]

Welcome to the forum, Mads98! Could also be a cross reaction (different than cross contamination) to another food whose protein component is similar enough to gluten that it triggers the same reaction. Common cross reactors in the celiac community are oats, dairy and eggs. The transglutaminase (aka, "meat glue") in formed meat products is also a cross reactor for some. It could also be something unrelated to your celiac disease but until a connection with celiac is ruled out I would still look at cross reactors. My suggestion would be to keep a food diary to spot any patterns. By the way, getting violently ill after eating a sandwich made with wheat bread is not a sign of being a sensitive celiac. Eating something like that would give you a macro shot of gluten, not a micro shot like we commonly envision when we talk about cross contamination. 

[Mads98]

29 minutes ago, trents said:

Welcome to the forum, Mads98! Could also be a cross reaction (different than cross contamination) to another food whose protein component is similar enough to gluten that it triggers the same reaction. Common cross reactors in the celiac community are oats, dairy and eggs. The transglutaminase (aka, "meat glue") in formed meat products is also a cross reactor for some. It could also be something unrelated to your celiac disease but until a connection with celiac is ruled out I would still look at cross reactors. My suggestion would be to keep a food diary to spot any patterns. By the way, getting violently ill after eating a sandwich made with wheat bread is not a sign of being a sensitive celiac. Eating something like that would give you a macro shot of gluten, not a micro shot like we commonly envision when we talk about cross contamination. 

Thank you so much, I’ve never heard of cross reaction and now reading a little about it and it’s fascinating. 

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

 

[Mari]

Hi Mads   - I have wondered for years why so many Celiacs report having such immediate reactions to foods containing gluten. Others here have suggested you could have food intolerances or allergies which you may discover , remove from your diet and have less problems. But for more immediate relief it reminded what my health provider said when I  told her about the stomach discomfort I was experiences a while back. "Drink more water!". So simple and so necessary. Without sufficient fluids in our body we may chew our food well but it may be a sticky mass when swallowed. The stomach needs enough available fluids to turn that sticky mass into a liquid before it will be released into the small intestine. Acids are secreted in the stomach to digest the food but if the sticky mass is not broken up the acid may cause pain usually called heartburn. These are just so thoughts I've had after reading your music festival experience.

with me, the next time I had stomach discomfort I started sipping warm water. 3 large mugs later I was able to go to bed and sleep. 

 

I have a limited diet of foods I can eat. Most foods i react to cause inflammation in the small intestine. Several people have posted suggestions on how to deal with inflammation and cramping using various over the counter supplements. Read back a few months to read their posts/

[trents]

If I drank three large mugs of water in the evening I would have to get up to pee six times or more and not sleep much at all.

[Llana]

I'm going through a similar situation. I was just diagnosed with celiac disease a few weeks ago. I went to my doctor after, like you, getting violently ill after eating spaghetti and a burger in the same day. After that, I went gluten-free and got tested. 

Now, I've been on strict gluten free diet for 2 weeks. (I know, just a short period of time.) Yesterday I had rice, chickpeas, avocado... All of the normal things I eat. But I was feeling sick again this morning. Stomach cramps, sour burping, nausea.

I can't say I know what it is in order to help you, but you're not alone. 

[Wheatwacked]

Welcome Liana,

 

 Mild thiamine deficiency may lead to anorexia, nausea, vomiting and abdominal pain.

Could be cross contamination from the chickpeas or rice processing plant. You might glean ideas from this older post below.  If you stick to the foods on this list; Products allowed/disallowed in the Gluten Contamination Elimination Diet; from Dr Fasano while navigating your new diet choices will simplify while you learn what works for you.  I would replace the Gatorade with Red Bull. No vitamins in gatorade, just sugar with some potassium and phoshate.  Red Bull has seven essential nutrients.

Gatorade: Water, Sugar, Dextrose, Citric Acid, Salt, Sodium Citrate, Monopotassium Phosphate, Gum Arabic, Natural Flavor, Sucrose Acetate Isobutyrate, Glycerol Ester Of Rosin, Yellow 6.

Red Bull: Carbonated Water, Sugar, Glucose, Citri Acid, Taurine (antioxident essential amino acid), Natural and Artificial Flavors, Sodium Bicarbonate (Baking Soda), Magnesium Carbonate, Colors, Caffeine, Niacinamide, Pyridoxine HCl (Vitamin B6), Calcium Pantothenate, Vitamin B12.

Vitamin and mineral deficiencies are important to replenish due to malabsorption by the damaged small intestine villi.  Regularly overlooked by doctors.

 

[trents]

11 hours ago, Llana said:

I'm going through a similar situation. I was just diagnosed with celiac disease a few weeks ago. I went to my doctor after, like you, getting violently ill after eating spaghetti and a burger in the same day. After that, I went gluten-free and got tested. 

Now, I've been on strict gluten free diet for 2 weeks. (I know, just a short period of time.) Yesterday I had rice, chickpeas, avocado... All of the normal things I eat. But I was feeling sick again this morning. Stomach cramps, sour burping, nausea.

I can't say I know what it is in order to help you, but you're not alone. 

Avocados are a no no for those with histamine intolerance/MCAS. Have you looked into that disorder? It is a common one in the celiac community. It's reactions can feel similar to getting glutened.

Edited November 19, 2023 by trents

[knitty kitty]

On 11/10/2023 at 3:31 PM, Mads98 said:

Hi, I’m new here as I’m really struggling at the moment and haven’t really been able to find any answers.

I have been diagnosed with Coeliac for 9 years now. It wasn’t a massively hard transition for me as my grandma has it so I knew about the diet already. I find following the diet not really a problem and am very strict and cautious.

last year my friend accidentally fed me her normal sandwich, I was petrified when we realised and tried to make myself sick up immediately to get it out of me but couldn’t make myself sick… but an hour later I was uncontrollably vomiting till no more bile could come out and feeling very faint for quite a few hours. It was horrendous mainly because I was at a music festival without any home comforts… the pain was awful.

A few months later a falafel got me and again the same thing happened. So I start to understand just how sensitive I am to being glutened and my food anxiety is through the roof. I am so so careful and very nervous eating out in new restaurants or at a friends. 

This past year I have been into hospital 3 times with acute abdominal pains with sadly no explanation from doctors but you have very bad IBS or it’s your Coeliac with also no suggestions to managing the pain. 

The other night I did not sleep a wink, after 12 hours of pain and cramps (which I originally thought was IBS) the pain got so bad I was vomiting, and ended up again in hospital. I blew up like a balloon and felt like all the rumblings of diarrhoea but I couldn’t pass wind or go to the toilet. I was trembling in agony and really quite scared. 

 I have wracked my brain and am certain that I didn’t eat anything with gluten in it, I ate home cooked meals so I’m now down too, am I so sensitive this is the reaction to small cross contamination? 

I am wondering if anyone else experienced anything like this as I feel super let down by the doctors at the moment with no suggestions of pain relief or support. My main concern is that this is unrelated to my IBS or Coeliac and there is another issue… 

Have you been checked for nutritional deficiencies?  Are you taking any vitamin supplements? 

Malabsorption due to Celiac Disease is commonly unaddressed.  We are frequently low in the eight essential B vitamins which we must get from foods or supplementation because our bodies cannot make them.  

Supplementing with the B Complex vitamins and additional nutrients is beneficial while you are healing.  Check with your doctor before supplementing.  

A Thiamine Deficiency Disorder can cause Gastrointestinal Beriberi with all the symptoms you've described.  Doctors are not well educated in vitamins and deficiency symptoms, so Gastrointestinal Beriberi is often written off as IBS or gluten exposure.

A combination of Thiamine B1, Pyridoxine B6, and Cobalamine B12 work together to relieve pain.  

Hope this helps!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/