Is this celiac?

[Hmart]

The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative. 
I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions: 

1. How do I know if I have celiac and not something else?

2. Are these symptoms what others experience from gluten? 

When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.

[trents]

Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs.

So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?

[Hmart]

I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 

[Scott Adams]

You can still have celiac disease with negative blood test results, although it's not very common: 

Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/ 

Seronegative Celiac Disease - A Challenging Case:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/ 

Enteropathies with villous atrophy but negative coeliac serology in adults: current issues:
https://pubmed.ncbi.nlm.nih.gov/34764141/ 

 

[trents]

But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?

[Wheatwacked]

On 10/26/2025 at 7:32 AM, Hmart said:

It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b.

Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac.

As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups.

On 10/26/2025 at 11:52 AM, Hmart said:

Trader Joe’s baked tofu which I didn’t realize had wheat.

Did your doctor say you do and you are questioning the diagnosis?

Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people".

Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease.

So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.  

On 10/26/2025 at 11:52 AM, Hmart said:

onset of tinnitus earlier this year and I had Covid at the end of June.

As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms.

Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1.

Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study

 

Quote

 Vitamin D and the Immune System  Vitamin D can modulate the innate and adaptive immune responses. Deficiency in vitamin D is associated with increased autoimmunity as well as an increased susceptibility to infection.

Quote

Iodine Fact Sheet for Health Professionals

that urinary iodine levels decreased by more than 50% between 1971–1974 and 1988–1994 [2,33]. Much of this decline was a result of decreased levels of iodine in milk due to the reduced use of iodine-containing feed supplements and iodophor sanitizing agents in the dairy industry [34] as well as the reduced use of iodate dough conditioners by commercial bakers. The use of erythrosine, an iodine-containing food dye commonly used in fruit-flavored breakfast cereals, also decreased during this time [34] though it is unclear to what extent this change actually affected urinary iodine levels because the bioavailability of iodine from erythrosine has been found to be low [35]. This sharp decline in urinary iodine levels caused some concern during the late 1990s that the iodine sufficiency of the U.S. population could be at risk if this trend continued [33].

Edited October 27 by Wheatwacked
typos

[Theresa2407]

Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab.

How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                     

 

How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!

This is what I have found will work for you.

First 6 weeks should be:

lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)

fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)

fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)

a hand full of almonds daily (pecans and walnuts can be substituted)

brown rice

lentils

Citrucel daily (or the equivalent) Good source of fiber.

No dairy of any kind (milk, cheese, yogurt)

No breads

No pasta

No oats

No pizza

No gluten-free beer

No snacks like cake, biscuits, pies, donuts.

Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.

10% of people with gluten-free will be intolerant to dairy

10% can not tolerate oats

After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.

Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.

You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.

Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.

Don't take supplements while healing as your body is not accepting them and they will flush through your body.

Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.

Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed.

I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start!

Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 

[Hmart]

Thank you so much for the responses. Every piece of information helps. 
I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday. 
I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December. 
As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.  
I ordered some gluten-free meal replacements to help. 
But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful. 

Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms. 

Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long? 
 

[Theresa2407]

A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well.

Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.

[Scott Adams]

The reaction one gets when they get glutened varies a lot from person to person. 

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.):

 

 

[Beverage]

Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?

[Hmart]

Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!

[trents]

Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.

[knitty kitty]

@Hmart,

The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.  

Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.  

Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them. 

Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.  

Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract. 

Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.  

Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.  

Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.  

Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below.

Thiamine, gastrointestinal beriberi and acetylcholine signaling

https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/

Keep us posted on your progress!