Celiac Crisis - Experience?

[GFreeIowaMom]

Hello! I have never posted on here. I want to preface this post by saying a have no official diagnosis of Celiac disease, but I have been gluten free for the past 5 years. I was too ill to wait to see a gastro, and out of desperation started the low fodmap diet. Surprise, the only things I couldn't eat were gluten and oats but I wasnt tested until I had essentially eaten next to nothing for 2 months and then was gluten free for 4 weeks leading up to my bloodwork. I very recently was in the ER twice in one week for an intense abdominal pain, diarrhea and vomiting. The first time they didn't find anything but only Morphine killed the pain, the second time they did a CT with contrast and found a small bowel infection and inflammation. After antibiotics, I still needed a round of steroids to get better and I'm still struggling with some fatigue and swelling in my abdomen. I was actually able to see a gastroenterologist pretty soon after despite a mixup with referrals. However, I just got my blood work back and there is still no sign of celiac disease. My question is, has anyone had a celiac flare or celiac crisis and what type of pain did you feel? I had an extremely specific type of pain. It felt like contractions in my stomach, intense squeezing that would last for several minutes accompanied with extreme burning pain from my stomach area (small bowel I am guessi g) up my esophagus. None of my pain was below my belly button. It would subside and there would be no pain for a few minutes, and the it would come back. I did end up vomiting a few times which was extremely painful and difficult (not your average expel at all costs type of vomiting) and I nearly fainted/blacked out, but mostly it was intense watery diarrhea. To be clear the pain (for those that get it) felt like contractions around the 7-8 cm mark and it came on out of nowhere. My gastro said she thinks I had a stomach virus but no one else in my 5 person household has been sick at all. I would love to hear your experiences because at this point I'm really struggling to not have any answers, even if it doesn't confirm my suspicion that I have celiac.

 

[knitty kitty]

@GFreeIowaMom, welcome back!

Sorry to hear you're feeling so poorly!  

Would you mind sharing your test results along with reference ranges?  Was a Total IgA done in addition to tTg IgA?  Have you been checked for anemia?  

Have you had a genetic test done?  You don't have to eat gluten for a genetic test.  A positive gene test doesn't diagnose Celiac Disease, but shows you have a genetic possibility to develop it. 

What's your diet like?  Do you consume dairy?  Vegetarian?  Is the whole household gluten free or just you?

[GFreeIowaMom]

I am considering getting a genetic test done, but haven't decided where to get it yet. I'm happy for suggestions if you have any. I just completed a full celiac panel and all tests were negative. When I say that there is no confirmation, there is literally none.

Recent tests:

Deamidated Gliadin Abs, IgA = 5 (Negative Range: 0-19)

Deamidated Gliadin Abs, IgG = 3 (Negative Range: 0-19)

t-Transglutaminase (tTG) IgA = <2 (Negative Range: 0-3)

t-Transglutaminase (tTG) IgG = 3 (Negative Range: 0-5)

Endomysial Antibody IgA = Negative

Immunoglobulin A, Qn, serum = 337 (Range: 87-352)

* In 2021 my Immunoglobulin A, Qn, serum was 402 which was the only abnormal result. All of the results from 2021 are the same or only one point different.

There is no way that I can work and take care of my kids and complete a gluten challenge. It takes me around 3 weeks to recover when I have been glutened: migraines, diarrhea, joint pain, depression, itchy skin, brain fog. I literally feel as if I've been poisoned.

I'm holding out hope for that new Australian test. Either way I just need an answer. I would appreciate anyone who has been through a celiac crisis or flare to describe their pain, or lack there of? Anything about the experience. I have no frame of reference and none of my test results point to Crohns either.

[GFreeIowaMom]

I should say that I live my life like I have Celiac disease. I never cheat, I manage cross contact. I almost never eat out but if I do it's all safe restaurants that I have vetted. 

 I eat a low lactose diet, but I do eat dairy. I do live in a household with gluten but I do the majority of the cooking and only cook and bake gluten free.

[Aretaeus Cappadocia]

53 minutes ago, GFreeIowaMom said:

I should say that I live my life like I have Celiac disease. I never cheat, I manage cross contact. I almost never eat out but if I do it's all safe restaurants that I have vetted. 

 I eat a low lactose diet, but I do eat dairy. I do live in a household with gluten but I do the majority of the cooking and only cook and bake gluten free.

Are you familiar with "Non-celiac gluten sensitivity (NCGS)"? As I understand it, it shows similar symptoms to celiac, but it doesn't involve an autoimmune response. This would be consistent with your symptoms and antibody test results.

https://www.chop.edu/conditions-diseases/non-celiac-gluten-sensitivity#:~:text=Although researchers are still learning,between the gluten-related disorders.

Edited March 21 by Aretaeus Cappadocia
swapped for a more relevant link

[knitty kitty]

Thanks for answering all my questions!  

Your symptoms sound very similar to mine when I had Gastrointestinal Beriberi, a deficiency in thiamine Vitamin B1 localized in the digestive system.  The pain was unbearable.  Every thing evacuated at the same time through the nearest exit like a fire drill!  It wss horrible.  I'll attach some case reports of Gastrointestinal Beriberi below. All the patients had some type of nutritional malabsorption problems similar to the malabsorption of Celiac Disease.

I went undiagnosed for quite a while, and, by the time I adopted a gluten free diet out of desperation, I had developed nutritional deficiencies.  Thiamine deficiency symptoms may show up first because our bodies require so much of it, especially if we're sick and stressed.  The earliest symptoms like fatigue or depression are easily overlooked or discounted as part of daily living.

Eating a diet high in carbohydrates (rice, gluten free bread, sugar) requires additional thiamine to turn the carbs into energy ATP for the body to use.  SIBO can develop causing inflammation and bloating.  Thiamine influences the intestinal bacteria, and keeps bad bacteria in check.  Thiamine has antibacterial properties.  Thiamine has anti-inflammatory properties.  

Metabolic demands for thiamine are increased during pregnancy and breast feeding.  Having several children close together can lower thiamine levels.  Low thiamine levels in the mother can affect the growth and development of breast fed babies.  

You understand that your children may have inherited your Celiac genes, if you have any.  There's some research that shows that children who have Celiac genes, but no sign of active Celiac Disease, may be able to postpone or prevent Celiac Disease from developing by maintaining a gluten free diet.  

You might want to try cutting out dairy, or at least change to A2 milk.  It has a different type of casein that doesn't trigger the autoimmune reaction like "regular" milk.  

Do get checked for other nutritional deficiencies because malabsorption affects them all, not just one.  Vitamin D is frequently low in newly diagnosed.  Vitamin D helps regulate the immune system and lowers inflammation. 

Hope this helps!

Case Reports:

Gastrointestinal Beriberi Presenting With Chronic Diarrhea: A Case Report

https://pubmed.ncbi.nlm.nih.gov/41531588/

Suspected Thiamine Deficiency Secondary to Chronic Gastrointestinal Illness: A Case Report

https://pubmed.ncbi.nlm.nih.gov/38984229/

[GFreeIowaMom]

I have heard of ncgs, but I dont know anything about a potential flare with that. I did cut out dairy for awhile - around 3 months and I didn't feel better or worse. I also spent some time being completely grain free, again no better or worse. Truly I'm looking for something acute, or slow moving with an acute onset as I had zero issues for nearly 5 years and then BAM,, excruciating pain. I have IBS stuck in my chart forever from a PCP even though after maintaining a gluten-free diet I have had zero issues up until the last week of February. I feel like I'm taking crazy pills because the only time I felt better was when I was on steroids. I don't think I could cure beriberi with steroids, right? And I don't have  diarrhea any longer. Just some slight abdominal distention, fatigue and headaches, which I did have all winter. I assumed it was some weight gain/holiday eating/ stress from work. Because I feel so similar to how I felt before the onset, I am terrified it is just going to come back. 

[trents]

@GFreeIowaMom, the two recent flareups that sent you to the ER. Do you know if you were "glutened" at those times or are you assuming it?

[knitty kitty]

@GFreeIowaMom,

I hear you.  No, I don't think steroids would cure Beriberi, but steroids could lower inflammation allowing available thiamine (which has anti-inflammatory properties) to be utilized elsewhere.  

I would be fine during the summer eating carb free or low carb, but come winter, with all the high carbohydrate seasonal foods, I'd be sick by January or February.  I've had experiences where that one extra helping of carbs would be that little push over the edge and I'd get sick.  In fact, one year, I was so ill, I was rushed to hospital where I was told I had to have my gallbladder removed.  It was infected.  Only years later did I find information about gallbladder dysfunction being caused by thiamine deficiency.  The gallbladder is part of the digestive system, so, of course, it's affected by thiamine deficiency and would be part of gastrointestinal Beriberi, too.  Thiamine also has antibacterial and antiviral properties, hence the infection.   Did they mention anything about your gallbladder when you had the CT scan?  

With thiamine deficiency, a twenty percent increase in dietary thiamine will cause an eighty percent increase in brain function.   The brain controls the Vagus nerve going to the digestive system.  An improvement in nerve transmission would alleviate some digestive symptoms.  Because an increase in dietary thiamine improves brain function, symptoms can wax and wane mysteriously.  

A diet in carbohydrates requires additional thiamine to turn the carbs into ATP energy.  An additional 1000 calories of carbs requires a 500 mg more thiamine to process them.  With extra carbs, but low in thiamine, the body saves what thiamine is available, and turns the extra carbs into stored fat, usually in the abdomen.  

Symptoms of low thiamine include anxiety, bloating, fatigue, headaches, SIBO, infections, and gallbladder dysfunction, of course.

Here's a case study of a young man who had his gallbladder removed, but he didn't get better because he had a thiamine deficiency underneath.  His Wernickes Encephalopathy symptoms appeared after the gastrointestinal problems, only then did doctors think about Thiamine deficiency. 

Wernickes is no fun, I can say that from experience.  I took over the counter Thiamine Hydrochloride (500 mg x 2 daily) to correct my thiamine deficiency.  I had improvement within an hour.  Doctors don't recognize Gastrointestinal Beriberi and early thiamine deficiency until the symptoms fit into their little "in the box" definition of Wernickes learned at med school.  Think outside the box! Thiamine is safe and nontoxic even in high doses needed to correct a deficiency.  

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://pmc.ncbi.nlm.nih.gov/articles/PMC6739701/

Edited March 21 by knitty kitty
Typo correction

[Aretaeus Cappadocia]

"I feel like I'm taking crazy pills because the only time I felt better was when I was on steroids."

Nothing crazy about that. Steroids are very powerful and can reset your body (not the best technical jargon, I know). I don't know enough to offer you any answers, but I think that result is significant.

If you haven't done so already, I would consult an immunology specialist. Before going, write down as many facts as you can recall in bullet point format, including dates and key details (try to be succinct). Give a copy to the Dr or send it in advance of your appointment. Bring someone with you to the appointment to help you take notes and help champion your story if you overlook something important or the Dr is slow on the uptake.

Apologies if I am just repeating what you've already done. Best wishes for you and your health.

[GFreeIowaMom]

2 hours ago, trents said:

@GFreeIowaMom, the two recent flareups that sent you to the ER. Do you know if you were "glutened" at those times or are you assuming it?

I don't know if I was glutened. I cooked at home all day on Sunday but I do cook in a shared space, and I made all typically safe foods. It came on super suddenly around 10:30 pm after consuming part of a black cherry fresca and we were leaving for the ER by 2:30 am. While the pain was resolved by Morphine and not eating, I only consumed plain salted mashed potatoes and plain rice over the next day (Monday) and through Tuesday during the day and evening I was okay but again in the middle of the night it came on again and I was back at the ER by 8 am Wednesday morning. 

The first time I was in, they tested my kidneys, pancreas and my gall bladder through blood tests and an ultrasound and they said I was fine to leave if I felt better but to come back if the pain came back. The second time around they thought I might be having a heart attack, so they ran an ekg and that was fine, then they did the CT and some xrays and found the inflammation and infection in my small intestine. I told the doctor that I suspected that I have celiac disease and they said this was a typical flare, and I questioned whether it usually like this and the doctor said yes, this is typical. That is all I have to go on. As far as the infection, they didn't tell me anything about it, they said my white blood cell count elevated by 1 point between Sunday and Wednesday (11 to 12). They gave me a zpack of antibiotics, there was an issue with a referral and I wasn't seen until the second week of March and that is when I got the steroids because I was still experiencing diarrhea. Then by a miracle I was seen just this week by my gastro np and she said it was likely just a bug but she ran the blood work and again my test results are above and I'm guessing my numbers would likely be higher if I was experiencing a flare. I started to think maybe I have something else like Crohns or UC and that a gluten-free diet is just helping to manage it, but my np said it wasn't likely as I felt better after only a 5 day course of steroids. Apparently she prescribes 8-12 weeks of steroids with Crohns. That was why I was hoping for anyone who experienced specifically celiac crisis, or an intense enough flare that led to an infection so I could compare. I guess I'm just looking for any answers I can find.

[GFreeIowaMom]

No, that is great advice, thank you! I don't think I have ever heard of an immunology specialist but happy to look into that.

[trents]

" . . . and again my test results are above and I'm guessing my numbers would likely be higher if I was experiencing a flare."

Celiac antibody test numbers do not respond that quickly. Isolated episodes of getting "glutened" as we say, or "flares" as you say, would not impact the numbers. It takes weeks or months of consistent and significant gluten consumption to elevate antibody levels into the positive range. IMO, there is something else going on.

[knitty kitty]

Thiamine is found mostly in meats.  But mashed potatoes, rice, and an empty calorie soda would have worsened a thiamine deficiency.  

Aspartame can aggravate thiamine deficiency and messes up brain chemical balance, also affecting thiamine. I can't do aspartame because of this.  Read this study.  

Alterations in uptake and metabolism of aspartate and glutamate in brain of thiamine deficient animals

"thiamine deficiency could impair cerebellar function by inducing an imbalance in its neurotransmitter systems."

https://pubmed.ncbi.nlm.nih.gov/476483/