Diagnosed gluten allergy but not Celiac

[Waterdance]

Hi and thanks for this place to ask questions.

I have been diagnosed with a gluten and milk allergy but so far I have no Celiac diagnosis and honestly I probably don't fit the diagnostic criteria for a diagnosis of Celiac Disease. I've come here because I'm having problems and you all would be knowledgeable about gluten free diets.

 

An allergist diagnosed me with a gluten and milk allergy about 15 years ago but she said "if you eat a lot of it, don't worry about it." This haunted me because I did not eat a lot of it but it was in my diet. Going 100% gluten free was daunting so I struggled with lowering my intake and observing results when adding it back. Due to aging, I think, the problem is worse now. I know ingesting gluten almost immediately causes a hemorrhoid flare up. It's very painful and I have severe chronic issues with it and even one surgery which did not solve much and the problem came back with vengeance. I know from my own experiments that I can build a tolerance to gluten in my diet but overall if I want to avoid chronic pain and discomfort I should just eliminate it entirely.

 

When it comes to my diet, I found not only gluten to be problematic but all grains! This is terrifying to me. Keeping a grain free diet was difficult and left me hungry all the time.

 

My question for you all is do you have any tips to help me live on a grain free diet sustainably long term?

And

Do any of you know of or heard of hemorrhoids, constipation and diarrhea being main symptoms to gluten intolerance?

[trents]

Welcome to the forum, @Waterdance!

Constipation and diarrhea are classic celiac symptoms and hemorrhoids is usually the outworking of either or both of those two problems.

But I'm curious about your statement, "I probably don't fit the diagnostic criteria for a diagnosis of Celiac Disease." Perhaps your understanding of what that encompasses is outdated and deficient, as is also true of many physicians. Actually, now there are over 200 symptoms and medical conditions that have come to be associated with celiac disease and the list keeps growing. 

And you use the term "gluten intolerance". What does that mean to you? Actually, gluten intolerance is a catch all term referring to two different gluten disorders: celiac disease and NCGS (Non Celiac Gluten Sensitivity). Celiac Disease is an autoimmune disorder characterized by ingested gluten triggering the immune system to attack the lining of the small bowel. NCGA or just, gluten sensitivity, for short, is a reaction to gluten that is not autoimmune in nature (neither is it an allergic reaction per se) but it's symptoms overlap with that of celiac disease. We actually don't know a lot about NCGS yet but some experts believe it can be a precursor to celiac disease and it is 10x more common that celiac disease. 

There are some blood antibody tests that are pretty specific to celiac disease but they require that you have been eating normal amounts of gluten for weeks/months prior the blood draw. Having the blood draw done while being gluten free or even having been on a reduced gluten diet will invalidate the testing. There was a recent article posted in this forum about testing being developed that did not require breaking a gluten fast but it is not available yet. When and if it is, that will be a giant breakthrough because so many people experiment with the gluten free diet before they ever get tested and can't safely utilize the "gluten challenge" because their reactions are too severe. So, they can't distinguish whether they have NCGS or celiac disease and must live with the ambiquity. 

There are also some people who react negatively to all cereal grains. You may be one of them. Technically speaking, gluten is found only in wheat, barley rye, and some cultivars of oats. But all cereal grains contain proteins that more or less are similar to gluten and, apparently, similar enough to cause a gluten-like reaction in some people. 

Have you experimented with non-cereal alternative grains like buck wheat or sorghum? Can you substitute potatoes for grains to get calories?

Have you looked into SIBO (Small Intestine Bacterial Overgrowth)/histamine intolerance? This could also explain the problems you are having.

You are not going to want to hear this because you will feel like you are starving but the Auto Immune Protocol Diet will probably make you feel a lot better.

 

[Waterdance]

Thank you so much for your informative reply.

My GI doctor ruled out gluten celiac entirely because I didn't have skin rash.

I had a histamine response to wheat and milk by scratch test by an allergist. I'm not always symptomatic but the older I get the worse it gets. I've found through trial and error that I can react to all grains. Buckwheat and corn included. I tolerate some rice but I wouldn't want to eat it every day. Potato is pretty good for me but I can't eat it every day either. I compromise with squash. I tolerate it well.

The Best I feel is while fasting. When I'm in pain and discomfort it's easy to fast even long term, it helps. The problem I'm having is I'm great with my diet for 3-6 months then I start to cheat again. When I don't get immediate symptoms I get this foolish false security. I react then go back to my diet. Rinse and repeat. I suppose discipline is my real issue. I'm very tired of perusing a diagnosis. The constant gaslighting and dismissal is exhausting.

Thanks for your suggestion of the autoimmune protocol. I will give it a try. Perhaps the guidelines will help me to navigate better.

 

Thanks again.

[trents]

"My GI doctor ruled out gluten celiac entirely because I didn't have skin rash."

Are you serious? The overwhelming majority of people with confirmed celiac disease do not have the rash. It's called dermatitis herpetiformis. It is found in only about 10-15% of those with celiac disease: https://www.celiac.ca/gluten-related-disorders/dermatitis-herpetiformis/

If your GI doc is operating on that piece of misinformation, I would start looking for a new GI doc because I wouldn't trust him/her in general. 

Edited August 14 by trents

[Waterdance]

Thank you for saying that. That doctor diagnosed me with IBS with no follow-up so the relationship is already concluded. If I pursue diagnosis further I'll request someone else. 

[Awol cast iron stomach]

On 8/13/2025 at 8:33 AM, Waterdance said:

Hi and thanks for this place to ask questions.

I have been diagnosed with a gluten and milk allergy but so far I have no Celiac diagnosis and honestly I probably don't fit the diagnostic criteria for a diagnosis of Celiac Disease. I've come here because I'm having problems and you all would be knowledgeable about gluten free diets.

 

An allergist diagnosed me with a gluten and milk allergy about 15 years ago but she said "if you eat a lot of it, don't worry about it." This haunted me because I did not eat a lot of it but it was in my diet. Going 100% gluten free was daunting so I struggled with lowering my intake and observing results when adding it back. Due to aging, I think, the problem is worse now. I know ingesting gluten almost immediately causes a hemorrhoid flare up. It's very painful and I have severe chronic issues with it and even one surgery which did not solve much and the problem came back with vengeance. I know from my own experiments that I can build a tolerance to gluten in my diet but overall if I want to avoid chronic pain and discomfort I should just eliminate it entirely.

 

When it comes to my diet, I found not only gluten to be problematic but all grains! This is terrifying to me. Keeping a grain free diet was difficult and left me hungry all the time.

 

My question for you all is do you have any tips to help me live on a grain free diet sustainably long term?

And

Do any of you know of or heard of hemorrhoids, constipation and diarrhea being main symptoms to gluten intolerance?

"...hemorrhoids, constipation and diarrhea" . Heard of indeed. Experienced too. In hindsight, I can remember from age 2 having, and trying to convey my issues. I went 38 years misdiagnosed. So yes one can have these issues. I did have to go back on gluten for a gluten challenge. I failed that challenge and 6 days in they give me permission to stop, and I proceed with my scopes as scheduled. Post those 6 days I had gained 13 intolerances. I had to remove many foods, and reintroduce them back in. Nine years later I have two that remain gluten, and corn.

I found it helpful to follow a whole foods diet. I also found autoimmune (AIP) protocol diet/recipes, and Paleo diet/recipes helpful. I still enjoy many of those homemade version recipes. I still continue to make my own salad dressings even if I can find a gluten-free store bought version. Fresh taste best to this palate now.  I did give up many grains I was off many and reverted to coconut flour and almond flour as work arounds .  I still remember the first time my gut experienced the reintroduction of quinoa. It wasn't sure if it wanted to flare or not. In 30 minutes it reported back ok this will pass. Many foods were removed post gluten challenge for me for 2 years and 4 months. At the 2 year 4 month mark is when my body said ok let's eat again, but don't ever feed me gluten again! I wish you the best. 

 

[Beverage]

For the blood screening test or any other testing, make sure you continue eating gluten every day until all testing is concluded. I'm traveling right now, but hopefully someone else can provide the link on how much you need. I think it's about 4 slices of gluten bread a day.

[Waterdance]

Thanks but that amount of gluten will def have me in chronic pain and discomfort. My hemorrhoids issues are quite severe. Part of the reason I've abandoned diagnosis. 

[Pamela Kay]

Waterdance, celiac disease is notoriously difficult to diagnose from symptoms alone. Symptoms of celiac disease are as varied as the people who have been diagnosed with it. AWOL has some good suggestions about the AIP diet, and I've included some food suggestions below, but I would like to give you a bit of information about how celiac disease develops that may help you understand what could be happening to you. 

Celiac disease can be triggered at any time of life by any kind of physical or mental stress. celiac disease can be latent in people for decades, then something happens to "trigger" the full-on disease. In people with latent celiac disease, their autoimmune response to gluten is constantly causing damage to the gut from the top down, but as long as the body has the energy and resources (nutrition) to repair it faster than the damage is actually happening, full blown celiac disease will remain latent. If something happens that causes a great need for those resources elsewhere (emotional stress, injury, illness, pregnancy), then the ability of the body to repair the damage is compromised, and the damage to the gut increases. The more damaged it gets, the less the gut is able to process and absorb nutrients, creating a downward cycle that is difficult to reverse. 

When the gut is damaged, it becomes permeable. This permeability allows larger molecules than normal to pass the gut barrier, and the body treats them as foreign invaders and attacks, causing an allergic reaction (the histamine response your allergist noted). Dairy is the most common food for those with celiac disease to react to, but those with celiac disease can become allergic to any food they eat a lot of. 

Each time someone with celiac disease goes off of the gluten free diet, their gut has an opportunity to repair itself, the antibodies they have developed to gluten and other foods fade, and they feel better. If gluten is reintroduced, a rebound effect happens. All those antibodies that faded are reactivated and come back stronger than ever. 

As a support group leader for those on a gluten-free diet for over 30 years, the sickest people I have seen are those who are unable to stick to the diet. Often these folks were never confirmed to have celiac disease, so they stop eating gluten for a while, then feel better, then eat it again, then feel worse than ever. When someone is diagnosed with celiac disease, they know they MUST strictly stick to the gluten-free diet for life or risk serious health consequences. No questions asked, no cheating. 

Someone like you, who has been told they don't have celiac disease, does not have this absolute requirement in mind when trying to stick to the diet. Not having that certainty makes it that much harder to stick to the diet. As was pointed out in another response, your GI doc erroneously ruled out celiac disease by saying you didn't have dermatitis herpetiformis, a variant of celiac disease that causes an itchy skin response, usually on the knees and elbows or other pressure surfaces. Unless you have actually been tested for celiac disease, you have no way of knowing based on symptoms or likelihood if you do or don't have celiac disease. The only way to accurately diagnose celiac disease at this point in time is by serum blood tests or the endoscopy, which are likely to be inaccurate at this point because you have been on and off the gluten-free diet. 

So, here are your choices.

You can continue as you are, going on an off the diet, but, if you do have celiac disease, that can result in permanent damage to your health, including developing one or more of the 80 associated autoimmune diseases. Even if you don't have celiac disease, going back on the foods that trigger a reaction sounds like it is aggravating the condition. And it sounds like this is negatively affecting your quality of life. As you are tired of pursuing a diagnosis at this time, consider trying again after a break.

You have, understandably, decided that a gluten challenge  is not for you, and I agree (besides aggravating your condition, it can trigger other autoimmune diseases, as happened with AWOL and others I have seen). You could go ahead and take the blood test without a challenge (an MD can order it) if you are currently eating some amount of gluten on a regular basis, knowing that it could result in a false negative, but that a positive result would be definitive. 

You could take a test for the genetic markers for celiac disease. If you have the celiac disease markers, that would make celiac disease much more likely (1/3 of the population has the markers, but not all who have them have celiac disease). If not, then that pretty much rules out celiac disease. It's not definitive, but it gives you more information.

Or, you can decide to commit to a gluten-free diet for life regardless of whether or not you have celiac disease. You say you are having trouble sticking to the diet long term, in part because the food does not satisfy you. One thing that may help with this is to understand that that the antibodies to some foods will eventually fade after a couple of years, as happened with AWOL. Having the goal of eventually being able to reintroduce some of the non-gluten foods you can't tolerate now may help you to stick to the diet long enough for that to happen. I have even know folks that could eventually reintroduce dairy.

Keeping a food diary as you reintroduce foods after a fast will help inform you about what is causing your gastrointestinal distress. Reintroduce foods one at a time, and slowly.

Here are some food tips. Stay away from canola (rapeseed) oil and other mustard products. Don't eat quinoa (the saponins are very irritating to the intestine). Try tapioca or cassava products. Millet is well tolerated by some sensitive folks and the flour has a nice texture. Chestnut flour is an option for some (check out Le Pain des Fleurs chestnut products). Amaranth is another flour you could try. Make sure the products you choose are specifically marked gluten-free.

I hope some of this is helpful to you, Waterdance, and that you find a way to progress to feeling well.

 

[Waterdance]

Thank you so much for this thorough and informative post. This information does help me to understand my body better. I will commit to a strict gluten free diet. I may not have a diagnosis but I know gluten is causing issues. The worst offender, white bread, causes a reaction within 20-30 minutes. Which I hate because I like sandwiches. Lol. Common sense dictates that it's time to stick to a strict gluten free diet. Thanks for the tips about alternatives. I do cook and bake so it's helpful to know what may work. I appreciate so much all the time and effort you all have put into helping me understand and being supportive. Thank you. 

[Pamela Kay]

Glad this helped. There are lots of alternative breads out there, so someone has likely made some sort of paleo bread with no grain. And if you bake, experiment with some of the alternative flours to see what you can come up with.

If you commit to the gluten-free diet 100%, you may want to do a bit of research on some of the tricker aspects of getting gluten out of your diet, such as cross contamination in the home kitchen (pots and pans, cutting boards, toaster, airborne flour). Don't feel you have to do everything at once, or let this overwhelm you. I've always said that going gluten free is a process, not a moment. The reason I mention this is that, if you think you are gluten-free, but still having symptoms, you may realize that even minute amounts of gluten cause a reaction for a while.

Let me know if you have any questions. 

Pam

[Wheatwacked]

On 8/19/2025 at 6:26 PM, Pamela Kay said:

Celiac disease can be triggered at any time of life by any kind of physical or mental stress.

I believe that what triggers acute Celiac Disease is vitamin D deficiency.  When we have stress it depletes our already low vitamin D, (40% to 60% of us in the industrial world are deficient) allowing the Celiac genes and the immune system to run amuck.  At 93 ng/ml 25(OH)D blood level, the last time I accidentally glutened myself, all that I got was a runny nose and burning eyes three days later.  It took 8 years, taking 10,000 IU a day to get to this blood level.

Vitamin D Is Not as Toxic as Was Once Thought

Possible Role of Vitamin D in Celiac Disease Onset

On 8/13/2025 at 7:56 PM, Waterdance said:

The Best I feel is while fasting.

So true.  If I am working on something I'm enjoying, I put off eating because after I eat I mostly feel worse.  Not so much anymore, but it's been a life long struggle with the anorexia.  M&M Peanuts is a good go-to snack.  For the dairy Kosher Dill pickles, brine fermented, not vinegar quick pickles (vinegar kills the bacteria), will repopulate your gut with Lactobacillus that exretes lactase, the reason adults are not lactose intolerant.  Also, grassfed milk has less omega 6 fatty acids than commercial grain fed dairy. Grassfed omega 6:3 ratio is 1:1; Organic milk 3:1; Commercial Dairy 5:1.  Omega 6 causes inflammation.  The typical western diet is 14:1.  Wheat flour is 22:1.  A good reason not to eat gluten.  Here is a list: High omega-3/low omega-6

I find it interesting that the new diagnosis of Non Celiac Gluten Sensitivity was created 10 years after Norman Borlaug, "the father of the Green Revolution" and our modern grain crops, received the Nobel Peace Prize in 1970.

 

Edited August 23 by Wheatwacked
corrections

[Waterdance]

Thanks. I believe I can trace my gluten and milk allergies to specific traumas in my life. I've had some quite severe traumas over my lifetime. Mostly in my history I was so out of sorts surviving that diagnosing gluten sensitivity/allergy/celiac was just not on the table for such a survival mode existence. Vitamin D makes sense too. Now I take very good care of myself, I have a rock solid stability and I do take 1,500 IU of D daily. It's more obvious to me now what's causing problems and so most of the time I only eat protein and vegetables. I cheat sometimes. I end up paying for it though. 

[trents]

I don't think we can say that just one thing, whether vitamin D deficiency or emotional trauma, or a viral infection, or what ever is always what triggers the onset of celiac disease. We do know there is a genetic component to it and there is increasing evidence that factors creating gut dysbiosis (such as overuse of antibiotics and preservatives and environmental toxins) are major players. Hybridizing of heirloom wheat strains to increase the gluten content by multiples may also be a factor.

[Wheatwacked]

11 hours ago, Waterdance said:

I was so out of sorts surviving that diagnosing gluten sensitivity/allergy/celiac was just not on the table

Undiagnosed Celiac Disease was your root cause.  As you heal and adress nutritional deficiencies you'll see lifetime symptoms disapear, some you don't even realize you have.

    Until 1951 no one knew the cause.  Around 1900 it was also called "Infantilism", you outgrew it or died.  Dr Hass around 1920 was the first to come up with a treatment with close to 100% survival.  At 63 I followed his diet for a while and it helped me past the early stage of recovery.  Even then it was only considered a childhood disease, eventually the child outgrew it.  Once outgrown the child was reintroduced to wheat.  After that any symptoms that arose were attributed to whatever was popular, gall bladder, allergy, endometriosis, etc.  Often the final diagnosis is "we do not know the cause, it is just normal for some people, but we have medications that will treat your symptoms."   I was bloated, and always colicky.  When my son was born in 1976, my mother commented "You got what you gave."  I pointed out to my wife that he looked like a Biafra baby from the Biafra famine in 1970.  One of the first successful sales of modern wheat was to replace the rice the Biafran Aid Society supplied.  After searching the state where we lived (pop. 6 million) we found the one child gastroenterologist familiar with Celiac.  He only had 13 other children dianosed with the disease under his care and after several endoscopies my son was diagnosed, put on GFD and immediately thrived.  The doctor also suggested my wife and I also do gluten free.  We declined, not having any gastro problems.  That remains my only regret in my life.

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE  Dr Hass' 1924 puplication with diet.

There are over 300 symptoms related to celiac disease

I believe that if you have the genes, you have Celiac Disease, but your immune system is strong enough to keep it subdued, or your symptoms are misdiagnosed as something not wheat.  Until something happens to weaken the immune system, and symptoms, often misdiagnosed and wrongly treated, until eventually you die, never knowing or you get lucky and end up eating gluten free.  To me it explains the late onset of acute symptoms, many are "just normal for you".

Ever wonder why people get so angry if you suggest they may have Celiac Disease.  Wheat is a cultural and economic staple of our lives.  And it is addictive, it numbs our body.  Suddenly, gluten free, all the other irritants are no longer suppressed.

 

Edited August 24 by Wheatwacked

[Waterdance]

It is addictive. The dopamine hit I get from a sandwich after being gluten free for a while is insane and I immediately crave more. Maybe if I think of it more like an addiction I'll be able to beat it in the future. 

[knitty kitty]

Actually, it's an opioid hit.  Gluten attaches to opioid receptors we have throughout our bodies including our digestive systems.  That opioid hit from gluten attaching to opioid receptors is probably why some people don't have gastrointestinal symptoms.  Some people feel worse after going gluten free because they are no longer consuming exogenous opioids from gluten.

We also have opioid receptors in our brains which can account for brain fog.  Remember that antibodies against gluten attack not only the gluten on the receptors, but also our own tissues because structural elements in our cell membranes resemble gluten.  In our digestive systems, our villi, the anemone like projections that absorb nutrients, are damaged.  Same type of thing in the tissue of the brain.  People with gluten ataxia tend to produce tTg 6 IgA antibodies.  Diagnostic blood tests for Celiac test for tTg 2 antibodies from the intestines.  People with Parkinson's and Alzheimer's also produce tTg 6 antibodies although they may not have Celiac Disease.  

Gluten is not just an addiction, it's a health hazard to us.

[Waterdance]

Wow! Intense. No wonder I'm tempted to cheat.

[Scott Adams]

 

Celiac disease is an autoimmune disorder, not something one "outgrows"; the historical belief that children did has been completely debunked by modern science. The immune response to gluten is lifelong. Furthermore, the idea that a strong immune system can "subdue" celiac disease is incorrect—the disease is the immune system mistakenly attacking the body. Symptoms manifest due to this autoimmune response, not because the immune system is too weak to suppress it. Finally, wheat is not chemically addictive, though the habit of eating it can be powerful and difficult to break.

On 8/22/2025 at 5:41 PM, Wheatwacked said:

I believe that what triggers acute Celiac Disease is vitamin D deficiency.  When we have stress it depletes our already low vitamin D, (40% to 60% of us in the industrial world are deficient) allowing the Celiac genes and the immune system to run amuck.  At 93 ng/ml 25(OH)D blood level, the last time I accidentally glutened myself, all that I got was a runny nose and burning eyes three days later.  It took 8 years, taking 10,000 IU a day to get to this blood level.

Vitamin D Is Not as Toxic as Was Once Thought

Possible Role of Vitamin D in Celiac Disease Onset

While maintaining adequate Vitamin D is crucial for overall immune function and bone health in celiac patients, this theory overstates its role. Vitamin D deficiency is a common consequence of celiac disease due to malabsorption in a damaged gut, not a proven root cause of its onset. The claim that high-dose Vitamin D can effectively neutralize the systemic autoimmune reaction to gluten is not supported by clinical evidence; a strict gluten-free diet remains the only known treatment. Furthermore, recommending a daily intake of 10,000 IU is potentially dangerous without medical supervision, as it can lead to hypercalcemia and kidney damage, despite newer, higher safety thresholds.