Coeliac Disease vs wheat intolerance

[Rageagainstthewheat]

In June last year I cut out wheat from my diet as I was having a lot of pain, bloating and toilet issues. This made a huge difference so I kept avoiding it. On the rare occasion I would accidentally have wheat it would make me really ill so my doctor referred me to a gastroenterologist. He suggested I do the gluten challenge before an endoscopy. I had a slice of bread for 5 days in a row but couldn’t handle any more than that. I had hideous pain on the left hand side of my abdomen which made me physically sick so I had to give up. My consultant carried out the endoscopy but warned me that the results wouldn’t be accurate as I was unable to complete the gluten challenge. Aside from acid reflux damage there was no sign of vili damage and the biopsies were clear. My consultant then suggested a genetic test which indicated I had one of the coeliac genes. He said as my symptoms after eating wheat were so bad and I had one of the genes he would recommend a gluten free diet to avoid the risk of damaging myself. I’m absolutely fine with that but at the back of my mind I’m wondering if its an intolerance I have and if so should I try introducing wheat in a few months to see if I still have a reaction as intolerances can sometimes be temporary? Or should I just assume it’s celiac disease because of my symptoms and the gene. I don’t want to give up wheat forever if I don’t have to but I don’t want to damage myself either. I’m very confused. Thanks 

[trents]

Welcome to the forum, @Rageagainstthewheat!

First, let's deal with terminology because you may not be using the term "intolerance" in the same way as it is normally deployed when referring to gluten-related disorders. Gluten is found not only on wheat but in barley and rye.

Though you will find some inconsistency in how people use the terms "intolerance" and "sensitivity", more often than not, "gluten intolerance" is used to refer to celiac disease and "gluten sensitivity" is used to refer to NCGS (Non Celiac Gluten Sensitivity). These two gluten-related disorders share many of the same symptoms, especially in the GI spectrum, so they can be very difficult to distinguish apart from formal testing. Celiac disease causes inflammation of the small bowel villous lining, which over time, damages this membrane. NCGS causes diarrhea, gas, discomfort, etc. but does not damage the villous lining of the small bowel. NCGS is 10x more common than celiac disease. There currently is no test for NCGS. Celiac disease must first be ruled out. Some experts believe that NCGS can be a precursor to the development of celiac disease. The antidote for both conditions is the same: lifelong abstinence from gluten. I do not believe you are correct in asserting that if you have NCGS instead of celiac disease that it might go away and that eventually you may be able to go back to eating gluten. 

Since your testing for celiac disease has been sabotaged by eliminating gluten from your diet and not being able to endure the gluten challenge . . . and since you do have the genetic potential for celiac disease . . . and since consuming gluten makes you so ill you cannot complete the gluten challenge, I would operate under the assumption that you do have celiac disease and commit to lifelong abstinence from gluten. The challenging thing for you and for others who don't have an official diagnosis of celiac disease is the temptation to rationalize it away psychologically and fall off the wagon.

[Rageagainstthewheat]

Thank you for clarifying @trents, makes complete sense! I’m sure you’re fed up with people using the wrong terminology 🤣. 
The problem is that last year I took the ‘Premium food intolerance test’ from York Test and they very much sell you the dream of almost curing yourself after cutting out your trigger foods for 3 months. That did not work for me but I hoped it would eventually. 
Your advice was the same as my consultants and it makes complete sense. I think I would be silly not to follow it.

Thank you for taking the time to reply to me. 

[trents]

It's also important to understand that celiac disease is not an allergy to gluten. It is an autoimmune disorder fueled by gluten consumption. Food "sensitivity/intolerance/allergy" testing does not address this spectrum of the immune system response. Autoimmune disorders are characterized by the immune system attacking the body's own tissues. Having said that, it is typical for celiacs to develop a number of sensitivities/intolerances to non gluten foods over time. It can be almost any food but chief among them seem to be dairy and oats. This is all part of an immunes system that as become dysfunctional and hypervigilant, tied to a phenomenon known as "leaky gut syndrome". You might look that up.

[Wends]

Hi. I’m new on here too. It’s a tough one when you don’t have an absolute diagnosis. Having the gene doesnt diagnose you’re correct only points to susceptiblity So many gastrointestinal conditions can cause similar symptoms, unfortunately. It took over 15 years for my unconfirmed diagnosis, personally. I was gluten free for IBS and female health issues as recommended by nutritionist before I had heard of celiac disease. I started suffering IBS flares, and finally under the guidance of dietitian and gastroenterologist after reintroducing wheat following the low fodmap diet, many elimination diets of dairy, lactose, grains, potatoes, low histamine diet, they recommended gluten challenge to rule coeliac in or out. Couldn’t carry on with it after two weeks. Was made so sick. And lost too much weight. Horrendous IBS and fatigue, even the low fodmap version. I was given the choice to try and carry on gluten challenge before a biopsy could be done. I couldn’t do it. Had the standard gene typing rule it out, less than 1% chance of celiac disease. The gastroenterologist also a professor, still advised a strict gluten free diet because of symptoms, including low iron and folate anaemia. I was interested in the research on celiac disease having a science background, and tried to find info about the less than 1% chance. Only in the last few years have much rarer alleles associated been discovered. So the standard gene typing test is not 100%. Research is ongoing. Sorry for the long reply! Point is if you have one of the standard genes associated with celiac disease and you cannot tolerate wheat/gluten in your diet at all the gastroenterologist advice seems correct to follow. Unfortunately diagnosing celiac is not easy and straight forward most of the time - I know many coeliacs and also self dx gluten intolerants who go gluten free to be well, but many (myself included) see gluten as the tip of the iceberg, and other foods can be problematic in addition. At the end of the day it’s your choice. But consult your doctor to make sure all possibilities have been ruled out.

[Rageagainstthewheat]

Hi @Wends. Sounds like you’ve been through a really tough time! I hope you are coping and not in constant discomfort now. I too can’t tolerate a number of foods but nothing gives me hideous pain and sickness like gluten. It’s so strange because I was absolutely fine until I had my son (via c section) a couple of years ago. All my issues started after that. Thank you so much for your advice and for sharing your story. I really hope you get a diagnosis and/or answers that will help you. 

[GardeningForHealth]

Rageagainsthewheat, did you ever get a Celiac blood test?

Deamidated Gliadin Abs, IgA
Deamidated Gliadin Abs, IgG
t-Transglutaminase (tTG) IgA
t-Transglutaminase (tTG) IgG
Immunoglobulin A

[Eldene]

I live in South Africa, am a pensioner with no medical insurance and the State Hospitals do not do tests. Why waste all that money if the symptoms are all there. I just stay away from gluten  and milk (intollerant!)

[trents]

5 hours ago, Eldene said:

I live in South Africa, am a pensioner with no medical insurance and the State Hospitals do not do tests. Why waste all that money if the symptoms are all there. I just stay away from gluten  and milk (intollerant!)

In some countries, there is government subsidization of gluten free food products as well as follow-up care if there is an official diagnosis of celiac disease. It is also true that, psychologically, it seems to be necessary for some people to have an official diagnosis in order to not rationalize it away and keep falling off the wagon. And most countries will cover the testing if the symptoms warrant it.

[Rageagainstthewheat]

@Eldene As mentioned above, I was told that an intolerance (sensitivity) is a temporary thing and that if you stay away from that food long enough your body could reset and there would be a high chance of being able to tolerate the food again. The only way to know if you can tolerate something again is to try it. However if you are coeliac you can’t ever have wheat again. As well as wheat I can’t eat dairy, eggs, and more recently Oates (even gluten-free Oates). If I could eventually reintroduce these foods again it would make a huge difference to my life. So it’s not so much about the diagnoses. 

[Wends]

Thank you, rageagainstthewheat. Love the name by the way! I’m a lot better than I was touching wood. IBS flares still even though follow strict wheat/gluten free. I try to follow low histamine diet and carb restricted diet which seems best for me personally, but it’s taken years to figure out. There’s a lot of gluten free certified foods I cannot tolerate. I eat basic, plain, whole real food. I am better avoiding the nightshade vegetables. This was a tough one as they are prevalent as well as addictive foods - white potatoes, sweet peppers, tomatoes etc. tobacco is also related plant. I may or may not have allergy to grains and keep trialling elimination and reintroduction diets (milk, lactose, gluten free oats, egg yolk (egg and milk allergy as a child). Allergy testing did show antibodies to wheat and rice, but might be from childhood.

I hope you feel much better soon 🤗 . Sorry to hear it all started after the c section and birth. From what I’ve read of the scientific literature on autoimmune diseases the “trigger” can be the stress to the body of something like that. Did you test positive on the igA celiac blood test, after the partial gluten challenge, out of interest? As well as genetic susceptibility? If not done already it may be helpful to have an allergy blood test? True cereal allergies can cause gastrointestinal pain and IBS symptoms too as well as non-igE intolerance. My gastroenterologist said I could have wheat allergy and or non-coeliac gluten intolerance.

I can understand wanting a definite diagnosis. And I agree (especially as is the case with outgrown allergies) that foods can be reintroduced to test tolerance thresholds. I have some experience of this with egg and milk. But it’s tricky with wheat and the gluten grains because of possible autoimmune celiac disease. Then there is the case that some specialists advise against eliminating foods for too long as tolerance can be lost. This is the case with a histamine restricted diet. But there is definitely cases where allergic foods have been eliminated and successfully reintroduced (the gaps reported have been years to decades!). It can be so confusing. You need to consult your doctors and keep pushing for answers?

Out of interest the book by the late Elaine Gotschall called Intestinal Health through diet… was a great help to me personally. She was ahead of her time and went back to university in her 60s to study to find answers. She presents the specific carbohydrate diet. There are many many that have benefited from the diet including celiacs, crohns and ulcerative colitis patients. Might be worth a read if you can find a copy? I got a second hand book online.

[Rageagainstthewheat]

@Wends it sounds like you have tried everything! You must find it difficult to have a varied diet with all the food restrictions? Did you get your allergy test through your doctor? I haven’t considered an allergy funnily enough. I did an intolerance test through York Test last June which is why I gave up wheat when I did. Obviously there is no scientific evidence behind intolerance testing but after I eliminated dairy, wheat, eggs and yeast as advised my symptoms improved massively. I have not been able to reintroduce any of these foods without having issues though unfortunately. It did cross my mind that my c-section triggered celiac disease which is why I have the other intolerances now. My coeliac blood test was negative but I was told 4 slices of bread wasn’t enough to eat to get an accurate result. Before that I hadn’t had wheat for well over a year. I will have a look into the book you recommended and also look into the histamine diet as that is one I haven’t heard of. 

[Wends]

23 hours ago, Rageagainstthewheat said:

@Wends it sounds like you have tried everything! You must find it difficult to have a varied diet with all the food restrictions? Did you get your allergy test through your doctor? I haven’t considered an allergy funnily enough. I did an intolerance test through York Test last June which is why I gave up wheat when I did. Obviously there is no scientific evidence behind intolerance testing but after I eliminated dairy, wheat, eggs and yeast as advised my symptoms improved massively. I have not been able to reintroduce any of these foods without having issues though unfortunately. It did cross my mind that my c-section triggered celiac disease which is why I have the other intolerances now. My coeliac blood test was negative but I was told 4 slices of bread wasn’t enough to eat to get an accurate result. Before that I hadn’t had wheat for well over a year. I will have a look into the book you recommended and also look into the histamine diet as that is one I haven’t heard of. 

lol I’ve done a few elimination and reintroduction diets over a number of years!

Initially I did the York test for intolerance too, that showed milk, egg yolk and egg white, yeast and gluten. I was on a gluten free diet but not strict because of bloating and pain mostly. - I rarely had bread etc. but would eat round things so was really a low gluten diet at the time. I hadn’t been tested for Coeliac disease. I know the intolerance test can just measure exposure to foods and the IgG can go up and protect from igE allergy symptoms as shown in several studies on resolved and outgrown allergies. I was allergic to milk and eggs so very interesting to look at it that way. I did the York test for Allergies more recent, which showed wheat, rice, soya  and few others. Made sense might be why gluten free foods never really “agree” much. The GP agreed with test result. They did the allergen test available to them on the NHS - which is limited but included wheat and the pet allergens. I was meant to be referred for skin testing but not heard anything yet 🙄 . I don’t know whether I have true allergy or intolerance.

The low histamine diet really helped with my period pain and IBS a little, and there’s loads of free info available online. Dr Janice Joneja (researcher and dietitian) has the book call Histamine intolerance The complete guide.. and the Swiss Histamine interest group have guidance and a list of foods (SIGHI list available online). Foods matter dot com in the UK based have articles and free info on histamine sensitivity from Dr Joneja too. I think there’s an interview where she describes histamine sensitivity and how to test for it - the low histamine diet for one to two weeks gives quick improvement if it’s that. If not you return to normal diet. She emphasises importance of nutrient density and eating everything /variety on the allowed low histamine foods and says it’s a complete diet to follow. I take the digestive enzyme which helps too.

Keep us posted!

[Pat Denman]

I had skin test at an allergy clinic a few years ago. Everything was negative! Worthless! I feel much better on a restricted meat only diet. I had all the symptoms of Celiac disease including cross reactions and other autoimmune conditions and am now 89 years old and never diagnosed by numerous doctors in the USA over the years. Just treated with pills to cover up the symptoms. Medicine is profit here!