Does this sound like celiac disease?

[JAD75]

Merry Christmas 🎄🎄

Sorry that this is such a long-winded first post.

I have had various gastrointestinal issues for at least the last 7 years, I have had regular nausea and vomiting (which was attributed to anxiety), I have had very bad anemia, diarrhea, and constipation, and been diagnosed with IBS. I had blood tests last year that showed liver function anomalies but they were put down to a virus. I asked my doctor if any of this could be celiac disease but was told no (mostly it seems because I am overweight).

I have therefore not cut gluten out of my diet because I was told it wasn't necessary - then on Friday night I shared a takeaway pizza with my mum and on Saturday morning felt so ill that I passed out at a train station and spent all of Saturday and Sunday vomiting bile approximately every hour. I also have constipation and stomach pain, I am scared to eat anything containing gluten again but I know that I shouldn't cut it out before any further blood tests.

Any advice would be welcome.

[trents]

Elevated liver enzymes and anemia are consistent with celiac disease rather than gluten sensitivity (aka, NCGS or Non Celiac Gltuen Sensitivity). 

You are in that Catch 22 situation where you are afraid to continue eating gluten because of the violent illness it sometimes produces but you know you most do that to render valid testing for celiac disease. Your other option would be to jump with both feet into the gluten free world and see if your symptoms improve. If they do, you have your answer. However, if you live in the UK or another country were there are tangible benefits to an official celiac diagnosis or if, psychologically speaking, you need an official diagnosis to stick to the gluten free diet that may not be satisfactory. Merry Christmas to you as well!

Edited December 25, 2023 by trents

[knitty kitty]

Merry Christmas, @JAD75

Welcome to the forum!

Definitely sounds like Celiac symptoms.  I wonder if the Emergency department at hospital would do blood tests for Celiac antibodies while you are so ill.  

Sounds like you have developed nutritional deficiencies in the time you've been experiencing symptoms.  Anemia is caused by deficiencies in B12 Cobalamine, iron and other vitamins and minerals.  

Nausea and vomiting, constipation and diarrhea, gastrointestinal problems and abdominal pain (Gastrointestinal Beriberi), fainting, and liver enzyme abnormalities are symptoms of Thiamine deficiency.  Thiamine deficiency can be life threatening and needs to be corrected as quickly as possible.  If it gets worse, thiamine deficiency can affect brain function and may be permanent. 

The best way to diagnose thiamine deficiency is to take high dose Thiamine and look for improvement.  Doctors can administer Thiamine intravenously.  Thiamine is nontoxic and safe at high doses.  It's easily excreted in urine if not needed, so no harm in trying.  

I took over-the-counter thiamine because my doctors totally misdiagnosed me with IBS, too.  Like you, I was overweight at the time.  My doctor laughed at me.  He was wrong.  We have the inflammatory type of Celiac Disease.  

Having studied Nutrition at university, I dug out my notes and started supplementing with Thiamine in the form Benfotiamine which has been scientifically proven to promote gastrointestinal healing.  I took 500 up to 2000 mg a day.  I had significant improvement within an hour of taking the first dose.  I also took a B Complex with all eight essential B vitamins because they need each other to work properly and magnesium glycinate to make important enzymes with Thiamine.  

Most Celiacs have deficiencies in other vitamins and minerals. Vitamin D, and Vitamin C help regulate the immune system.  Correcting nutritional deficiencies is part of proper follow up care for Celiacs.  Many doctors are not familiar with nutritional deficiencies and overlook this part.

If you decide to continue eating gluten for testing, try cutting out dairy.  Many Celiacs react to dairy the same as to gluten because of molecular mimicry (they are similar in shape so our bodies cannot tell them apart).  

Hope you can get in for testing soon.  Please keep us posted on your progress!

[JAD75]

Thank you both for your replies, I am in the UK and spoke to the NHS helpline on Saturday, they advised me to avoid dairy, and now I understand why. There isn't much more non-emergency help I can get over the next few days I will look into taking vitamin supplements and follow up with my GP as soon as possible. I really appreciate the advice and support.

[Peggy Pannell Chrusciaki]

On 12/25/2023 at 6:30 AM, JAD75 said:

Merry Christmas 🎄🎄

Sorry that this is such a long-winded first post.

I have had various gastrointestinal issues for at least the last 7 years, I have had regular nausea and vomiting (which was attributed to anxiety), I have had very bad anemia, diarrhea, and constipation, and been diagnosed with IBS. I had blood tests last year that showed liver function anomalies but they were put down to a virus. I asked my doctor if any of this could be celiac disease but was told no (mostly it seems because I am overweight).

I have therefore not cut gluten out of my diet because I was told it wasn't necessary - then on Friday night I shared a takeaway pizza with my mum and on Saturday morning felt so ill that I passed out at a train station and spent all of Saturday and Sunday vomiting bile approximately every hour. I also have constipation and stomach pain, I am scared to eat anything containing gluten again but I know that I shouldn't cut it out before any further blood tests.

Any advice would be welcome.

I suggest an endoscopy where a biopsy can be taken.  That's how mine was discovered last month, even though my blood work showed negative for celiac.  Good luck!

[Scott Adams]

If you get an endoscopy for celiac disease you'll need to be eating gluten daily beforehand. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day: