Help! I have to eat gluten :(

[BadHobit]

I have been living as a celiac suspect since last year. Last year, I went to the doctor as a result of my long-lasting and persistent intestinal problems, and the doctor suspected celiac disease. He said cut out gluten for ten days and come back. I went to the doctor a month and a half later because I was completely healed. He did a celiac test (only IgA) and said you only have gluten intolerance, don't eat gluten. I also lived gluten-free for 7 months, did sports, etc.

Then, for a moment, I wanted a pastry and decided to try gluten for a month and get tested. That one month passed in vomit, I got hemorrhoids, my skin dried out/almost crumbled, my mouth was filled with sores and I lost weight, it was terrible! And in this horror, I couldn't be patient and immediately ran for the biopsy. In the biopsy, 2 pieces were taken from my stomach and 1 piece from the small intestine. Diagnosis, ulcer and reflux. And I was sent home with a lot of stomach medicine.

I immediately quit gluten. After two weeks I no longer needed any medication. Is it reflux? Vomiting? Come on! I know I dance like crazy.

During this process, I came across a celiac patient and he suggested that I extend my gluten-free diet as much as possible and have a full blood test. As a result of 5 months of the gluten-free diet, the very high cholesterol that I have had since childhood, which is called genetic, decreased and triglyceride disappeared. My blood is up and I even have B12 vit.

I continued to maintain this beautiful healthy state and had a gluten crash in the seventh month. Red, itchy, huge pimples or something like them appeared symmetrically on my elbows. I'm not sure, but it happened the day after I enjoyed sipping a colorful vodka cocktail. Two weeks later, the blisters on my skin faded, but then they began to appear red, and I was itchy again. When I looked at the packaging of a product I consume, I realized that I had had another gluten accident.

This time my IgG test came back positive. The doctor said - this is a different doctor but - start gluten, I have to refer you to gastroenterology.

I didn't plan to do that. I live a very healthy lifestyle, but more than one doctor has said that we need to be able to diagnose celiac disease definitively to intervene in possible future diseases.

Yeah! I'm prepared to make the sacrifice, so let's make it work.

I'm small size, so should I stick to one slice of bread daily for six weeks? 

 

 

[Scott Adams]

It sounds like you've been through quite a challenging journey, and you're handling it with great resilience! Here are a few things to keep in mind as you move forward:

Since you're preparing for a definitive diagnosis, a gluten challenge (reintroducing gluten before testing) is necessary. Typically, it's recommended to consume around 1-2 slices of bread or the equivalent amount of gluten daily for at least 6-8 weeks to ensure accurate test results. However, this can be difficult, especially if you've already experienced severe symptoms. Make sure to consult your doctor for specific guidance on how much gluten you need to consume during this period, as it varies from person to person.

It's understandable that the thought of introducing gluten again might be daunting, especially after your previous reaction. If you experience severe symptoms again, communicate with your doctor immediately. Sometimes adjustments can be made if the symptoms are too hard to bear.

You’re already living a healthy lifestyle, which is great, and it's commendable that you're so in tune with your body. Surrounding yourself with a supportive community or even joining a local or online celiac group can help you through the challenge period.

A confirmed diagnosis can help ensure long-term management and avoid potential complications down the road, so even though it's tough now, it may be worth it for your future health.

You’re making the right decision to follow through with testing, and it sounds like you're on the right path. Just remember to go easy on yourself during the gluten challenge, stay in close contact with your doctor, and let us know how things go.

[trents]

Welcome to the forum, @BadHobit!

For the biopsy they only took one sample from  the stomach and one from the small intestine? They should take several samples from the small bowel as the damage from celiac disease can be patchy.

Sounds like you were the victim of poor timing with regard to each of your celiac testing experiences in the sense of being tested while being off gluten.

One thing to be aware of is that once you remove gluten from your diet for a significant period of time, when you return to consuming it your reactions may be much stronger than when you were consuming it consistently.

Experts in the field have recently issued revised guidelines for the "gluten challenge" as they realized that their previous advice for amounts of gluten consumed daily during the gluten challenge was not intense enough to produce valid test results consistently. They are now recommending at least 10g of gluten daily (roughly the amount in 4-6 slices of bread) for at least 2 weeks prior to either blood antibody testing or the biopsy.

The rash you describe, do you think it could have been dermatitis herpetiformis?

[knitty kitty]

Welcome to the forum, @BadHobit

Were you tested for H. Pylori infection?  Sometimes this infection can cause stomach irritation and even ulcers.  H. Pylori infection can trigger Celiac Disease.  H.Pylori infection is frequently found in celiac disease.

Ask for DNA testing to see if you have any of the genes seen in Celiac Disease.  Having the genes for Celiac shows you have the potential to develop Celiac Disease.  Infections, physical trauma and stressful events can trigger the Celiac genes to become active.  Symptoms appear once activated.  If you don't have any genes for Celiac Disease, then it can be ruled out, and another reason for the ulcer and Gerd should be pursued.  

Stick with 4 - 6 slices of bread for the Gluten Challenge.

Keep us posted on your progress!

[BadHobit]

 

Thank you very much for your support and information.

I came close to eating a slice of bread yesterday but had to take a stomach pill because it caused pain. I went to the toilet 5 times, unbelievable. And I felt drunk, stumbling left and right and getting quite clumsy. The foul-smelling stools started right away. And I was very restless in my sleep, I woke up several times with nightmares. I don't even count the itching. It's too bad it happened so fast. I have itching and blisters, so I'll see a dermatologist tomorrow. I will let you know if it is dermatitis herpetiformis.

I just want to ask. I can't even eat 4 slices of gluten-free bread a day. I can get by on one or two slices of bread or three cookies for six weeks, right?

 

[knitty kitty]

@BadHobit,

You don't need to eat gluten to have a DNA test for Celiac Disease genes.  You need to let your doctors know how severe your reaction to gluten is.  It's endangering your health.  

I could not finish a gluten challenge after having been gluten free for a while beforehand.  My doctors diagnosed me by positive genes for celiac disease and improvement on the gluten free diet.  You've got positive blood tests as well.  A baseline endoscopy can still be done, just without the gluten challenge.  

The dermatologist needs to take biopsies from skin adjacent to the skin lesions or blisters, not right on top of them.  Hopefully, your dermatologist is experienced with Dermatitis Herpetiformis.  

Hope you feel better.  Let us know how things turn out.

[BadHobit]

Thank you, I will ask the dermatologist for a biopsy.

[Scott Adams]

3 hours ago, BadHobit said:

 

Thank you very much for your support and information.

I came close to eating a slice of bread yesterday but had to take a stomach pill because it caused pain. I went to the toilet 5 times, unbelievable. And I felt drunk, stumbling left and right and getting quite clumsy. The foul-smelling stools started right away. And I was very restless in my sleep, I woke up several times with nightmares. I don't even count the itching. It's too bad it happened so fast. I have itching and blisters, so I'll see a dermatologist tomorrow. I will let you know if it is dermatitis herpetiformis.

I just want to ask. I can't even eat 4 slices of gluten-free bread a day. I can get by on one or two slices of bread or three cookies for six weeks, right?

 

If your reaction to gluten is this strong and obvious, do you really need a formal diagnosis? Why not just go gluten-free?

[trents]

Just a heads up. Not every dermatologist is familiar with dermatitis herpetiformis nor knows how to correctly biopsy it. One common mistake made is to take the sample from the pimple instead of next to it.

I agree with Scott. Your reaction to gluten is very strong and you putting your health at risk by trying to go forward with a proper gluten challenge. If it looks like a duck, walks like a duck, and quacks like a duck then it's a duck! 

I don't know where you live but in some countries (like the UK) there can be government subsidies to offset the cost of buying gluten free food and other benefits for celiacs like follow up care if you have an official diagnosis. At any rate, talk to your doctor about getting the gene test as knitty kitty suggested and getting diagnosed on what info you do have so far. And if the dermatology biopsy is positive for dermatitis herpetiformis that is gold standard proof of celiac disease. But IMO, destroying your health by going forward with the gluten challenge is too big a price to pay in order to get an official diagnosis.

[BadHobit]

It happened like you said, the dermatologist prescribed the creams. He told me to go to gastroenterology and left the door open for immunology. I'm going to immunology because my throat swelled up last yesterday at night for no reason and suddenly I've developed asthma. And I don't have that. I gave up gluten so quickly that I couldn't even start. I am going to have a gene test. In my country, gluten-free food is costly but with a coeliac diagnosis, we can buy it for half the price. That's why I always eat potatoes, bananas and rice.

[BadHobit]

On 10/10/2024 at 6:41 AM, knitty kitty said:

Welcome to the forum, @BadHobit

Were you tested for H. Pylori infection?  Sometimes this infection can cause stomach irritation and even ulcers.  H. Pylori infection can trigger Celiac Disease.  H.Pylori infection is frequently found in celiac disease.

Ask for DNA testing to see if you have any of the genes seen in Celiac Disease.  Having the genes for Celiac shows you have the potential to develop Celiac Disease.  Infections, physical trauma and stressful events can trigger the Celiac genes to become active.  Symptoms appear once activated.  If you don't have any genes for Celiac Disease, then it can be ruled out, and another reason for the ulcer and Gerd should be pursued.  

Stick with 4 - 6 slices of bread for the Gluten Challenge.

Keep us posted on your progress!

H. Pylori is negative. However, I was treated twice for this infection. All of my unknown complaints started with pneumonia and were reinforced with Covid-19. I currently have thyroid disease. However, my thyroid problem receded with synthetic hormones and was almost solved. My body has been on alert for the last year. Especially skin, intestines, eyes.

[Scott Adams]

For what it's worth, at the time of my celiac disease diagnosis I was also diagnosed with H. Pylori and treated for it with antibiotics. The throat swelling sounds like an allergy that may not be associated with celiac disease--if you can recall the foods you ate before this reaction it might help you track down the culprit, but if you can't it might make sense for you to keep a food diary so that you can figure this out.

Also, if going through a gluten challenge to get a celiac disease diagnosis will allow you to get gluten-free food at half price, it would be worth it, but just be sure that you don't also have a wheat allergy that is causing your throat to swell, as you could have both an allergy and celiac disease.

PS - You should bring up the throat swelling to your doctor, as they may want to have you do allergy tests.

[BadHobit]

An entirely different infection caused the sore throat. My doctor said, "When you suddenly switch from a gluten-free diet to gluten, your immune system weakens." I got better with medication.

Once I recovered, I experimented with wheat-free but gluten-contaminated foods such as oats. Within a week, watery blisters appeared on my skin again. So I gave up gluten for good.

And hello, I gained weight, and I'm not skinny anymore (in fact, I was a person who lost weight by eating pizza and hamburgers!). My skin, stomach, and intestines are happy. I just think they can find out if I have celiac disease—and I'm ninety percent sure about the gluten part—with a diagnostic gene test. However, I prefer not to visit the hospital due to my excellent health.

I'll keep you posted when I have that gene test done and receive the results. Thanks a bunch for your help!

[trents]

BadHobit, did you know that 40% of the general population has one or more of the genes that have been associated with the development of celiac disease? But only about 1% of the population actually develops celiac disease. So, the gene test can legitimately be used to rule out celiac disease but not to confirm it.

[BadHobit]

This is bad news.😓