Is it coeliac, not all the symptoms seem to quite tie in?

[Worksop1]

Hi, so my son has been getting progressivly more tired, lethargic etc and has the start of a few neuro signs such as tingly fingers etc. He realised about 6 months ago that sliced bread was setting his stomach pain off and the pain was quite severe. He swapped to sour dough and he is fine with this. He is also fine with lasagne, pasta and breakfast cereal. He had a coeliac blood test done today as he is also loosing weight for no apparent reason and nothing else is showing in his bloods as being a logical explanation...but I cant help but think it just dosent sound like Coeliac. He has no bloating, diarohea, or anything else to make me think its Coeliac...what do you think?

[trents]

The absence of bloating diarrhea and GI symptoms certainly does not rule out celiac disease. Yes, those are classic symptoms but we now know celiac disease produces a huge array of non-GI symptoms and that many celiacs do not manifest GI symptoms at all, or at least until damage to the small bowel villi becomes severe. Celiacs that don't manifest discernable GI symptoms are known as "silent" celiacs.

How old is your son?

Indeed, there have been anecdotal reports that at least some with celaic disease can tolerate sour dough better than nonfermented bread products. Supposedly, the fermentation alters the gluten protein to render it less toxic. And there has been some very limited research to support this theory. But I caution you to assume that the absence of discernable symptoms means there is no inflammatory reaction at all going on in the gut. These heirloom varieties are used more commonly in Europe than in the USA and from the way you spelled "coeliac" I assume you are in the UK.

There are also some anecdotal reports and again, some limited research that suggest ancient, heirloom varieties of wheat may be "safer" for celiacs than the modern, hybridized strains that are commonly used in the food industry. Perhaps the lasagna and pasta you say he tolerates have been made with heirloom varieties. 

And the breakfast cereal he tolerates? You don't say but we assume you imply they contain wheat, barley or rye?

The curious component of your narrative is that sliced bread gives your son stomach pain and bloating but other gluten products do not, for which I have offered possible explanations. Having said that, it is also possible he is reacting to some ingredient in the sliced bread besides gluten.

Do you know specifically what celiac blood tests were ordered?

[Worksop1]

1 minute ago, trents said:

The absence of bloating diarrhea and GI symptoms certainly does not rule out celiac disease. Yes, those are classic symptoms but we now know celiac disease produces a huge array of non-GI symptoms and that many celiacs do not manifest GI symptoms at all, or at least until damage to the small bowel villi becomes severe. Celiacs that don't manifest discernable GI symptoms are known as "silent" celiacs.

How old is your son?

Indeed, there have been anecdotal reports that at least some with celaic disease can tolerate sour dough better than nonfermented bread products. Supposedly, the fermentation alters the gluten protein to render it less toxic. And there has been some very limited research to support this theory. But I caution you to assume that the absence of discernable symptoms means there is no inflammatory reaction at all going on in the gut. These heirloom varieties are used more commonly in Europe than in the USA and from the way you spelled "coeliac" I assume you are in the UK.

There are also some anecdotal reports and again, some limited research that suggest ancient, heirloom varieties of wheat may be "safer" for celiacs than the modern, hybridized strains that are commonly used in the food industry. Perhaps the lasagna and pasta you say he tolerates have been made with heirloom varieties. 

And the breakfast cereal he tolerates? You don't say but we assume you imply they contain wheat, barley or rye?

The curious component of your narrative is that sliced bread gives your son stomach pain and bloating but other gluten products do not, for which I have offered possible explanations. Having said that, it is also possible he is reacting to some ingredient in the sliced bread besides gluten.

Do you know specifically what celiac blood tests were ordered?

Hi and TY for your quick reply, yes we are in the Uk and he is 24. Im not sure which test he is getting but they do seem quite confident it may be this, interesting that some people dont have the typical symptoms and heirloom varieties of wheat etc. One thing he did notice was when he had a veggie burger that he hadnt had before it really set his stomach pain off again...when he checked the ingredients it had quite a lot of yeast extract! so he did wonder if you can be allergic to yeast?

[trents]

Yes, you can be allergic to yeast extract. Literally, anything with protein or protein fractions in it can cause an allergic reaction. And not all yeast is the same which adds to the complexity of your question.

Heirloom varieties of wheat contain much less gluten than modern hybridized cultivars. Barley and rye are also gluten containing grains.

[trents]

There is also a gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease and is 10x more common. There are no definitive tests for NCGS, however. Celiac disease must first be ruled out.

[dmaj]

On 9/12/2022 at 1:20 PM, Worksop1 said:

Hi, so my son has been getting progressivly more tired, lethargic etc and has the start of a few neuro signs such as tingly fingers etc. He realised about 6 months ago that sliced bread was setting his stomach pain off and the pain was quite severe. He swapped to sour dough and he is fine with this. He is also fine with lasagne, pasta and breakfast cereal. He had a coeliac blood test done today as he is also loosing weight for no apparent reason and nothing else is showing in his bloods as being a logical explanation...but I cant help but think it just dosent sound like Coeliac. He has no bloating, diarohea, or anything else to make me think its Coeliac...what do you think?

Does he have nausea?  If so, check into SIBO.  SIBO can be treated with antibiotics but often returns too.  It's determined by a breath test done at home over the course of a couple of hours after drinking a solution.

If he has nausea, does he feel better as the day goes on?  Is he of an age to use cannabis?  If so, look into prodromal CHS--though there's not a lot of info for the prodromal stage.  Quitting is the cure.  

I just met someone with the only symptom of Celiac being a bit of dizziness and nothing else.  Celiac is truly life changing, so I hope his test returns with a negative diagnosis.

[Scott Adams]

Since the OP did not mention anything about her son using cannabis, it's doubtful that they would need to worry about prodromal CHS.

I think that if your son has already made a connection between eating bread and increased symptoms, then he should either pursue further testing for celiac disease, or simply go gluten-free for a few months to see if his symptoms go away. At @trents mentioned, it could also be NCGS, and there are not tests for this yet.

[Worksop1]

10 minutes ago, Scott Adams said:

Since the OP did not mention anything about her son using cannabis, it's doubtful that they would need to worry about prodromal CHS.

I think that if your son has already made a connection between eating bread and increased symptoms, then he should either pursue further testing for celiac disease, or simply go gluten-free for a few months to see if his symptoms go away. At @trents mentioned, it could also be NCGS, and there are not tests for this yet.

He 100% def is not using cannabis and he dosent even drink...he is akin to a monk tbh! We have a follow up appointment next Friday to get the results for all his blood tests and the coeliac test...the only problem is because he has already stopped eating bread we arent sure if it will throw up a false negative. My son has actually suggested he eat a slice of bread half an hour before his appointment so the GP can see how bad he is and maybe have a feel of his stomach.

[Worksop1]

5 hours ago, dmaj said:

Does he have nausea?  If so, check into SIBO.  SIBO can be treated with antibiotics but often returns too.  It's determined by a breath test done at home over the course of a couple of hours after drinking a solution.

If he has nausea, does he feel better as the day goes on?  Is he of an age to use cannabis?  If so, look into prodromal CHS--though there's not a lot of info for the prodromal stage.  Quitting is the cure.  

I just met someone with the only symptom of Celiac being a bit of dizziness and nothing else.  Celiac is truly life changing, so I hope his test returns with a negative diagnosis.

No he dosent have nausea and he def isnt a cannabis user....not sure why you would think that tbh. I hope it comes back positive and so does he as the alternative is his condition isnt getting better...sometimes not knowing is far worse than the reality.

[trents]

If he cannot endure the pretest gluten challenge in order to ensure the testing is valid then I see no other choice but to trial a gluten-free diet. By gluten-free I don't mean cutting down on gluten but rather working to totally eliminate it. If he is inconsistent with it the results will leave uncertainty. This would mean eliminating all forms of wheat, barely and rye including sourdough, malt, tritical, kamut, etc. and educating himself as to the various ways gluten is hidden in processed foods by the food industry. It would mean becoming a dedicated ingredient label reader and realizing that gluten is included in things you would never expect, like canned tomato soup and soy sauce, pills and supplements. It would mean becoming aware of "CC" (cross contamination). He would need to be prepared for the impact it can have on his social life.

 

 

The problem for many people who begin the gluten-free journey but don't have an official diagnosis is that it's hard for them to stick to the plan. They are undermined by rationalization.

[dmaj]

3 hours ago, Scott Adams said:

Since the OP did not mention anything about her son using cannabis, it's doubtful that they would need to worry about prodromal CHS.

I think that if your son has already made a connection between eating bread and increased symptoms, then he should either pursue further testing for celiac disease, or simply go gluten-free for a few months to see if his symptoms go away. At @trents mentioned, it could also be NCGS, and there are not tests for this yet.

Thank you for your response.  When I mentioned fatigue, losing weight and stomach pain (and in my case, feeling dehydrated ) the doctor asked if I used cannabis. I found that perplexing.  He said prodromal CHS has similar symptoms. He was seeing more cases of CHS, where after negative test results for other illnesses, and only when the syndrome progressed to vomiting, did the prodromal symptoms make sense.  So, it was easier to rule it out before testing for other illnesses.  Hope I said that correctly.

I certainly didn't mean to be offensive.  I tested positive for both SIBO and celiac. Truly, I'd wish a curable diagnosis for anyone before an incurable positive celiac, so thought I'd cover a more minor possibility, as my doctor did.

[knitty kitty]

9 hours ago, dmaj said:

Thank you for your response.  When I mentioned fatigue, losing weight and stomach pain (and in my case, feeling dehydrated ) the doctor asked if I used cannabis. I found that perplexing.  He said prodromal CHS has similar symptoms. He was seeing more cases of CHS, where after negative test results for other illnesses, and only when the syndrome progressed to vomiting, did the prodromal symptoms make sense.  So, it was easier to rule it out before testing for other illnesses.  Hope I said that correctly.

I certainly didn't mean to be offensive.  I tested positive for both SIBO and celiac. Truly, I'd wish a curable diagnosis for anyone before an incurable positive celiac, so thought I'd cover a more minor possibility, as my doctor did.

Not meaning to hijack this conversation, but....

There's a link between cannabis use and Thiamine deficiency.  

Thiamine deficiency is frequently misdiagnosed.  Cannabis blocks thiamine from being used properly.  The symptoms of prodromal cannabis use are congruent with the symptoms of Thiamine deficiency.

Here's an informative article about this...

"Gastrointestinal Symptoms and Lactic Acidosis in a Chronic Marijuana User"

https://www.researchgate.net/publication/351177812_Gastrointestinal_Symptoms_and_Lactic_Acidosis_in_a_Chronic_Marijuana_User

The symptoms of Thiamine deficiency are not recognized by medical professionals. 

Abdominal pain and unintentional weight loss are early symptoms of Thiamine deficiency.  Nausea and later vomiting are also symptoms of Thiamine deficiency.  Neurological symptoms including tingly fingers (peripheral neuropathy) are also early symptoms of Thiamine deficiency.

When people cut out gluten containing breads and such, they are also cutting out the vitamins and minerals contained in them.  

Thiamine insufficiency or deficiency can occur within days or weeks.  Malabsorption due to damage in the small intestine caused by Celiac Disease can cause deficiencies in many nutrients.  

Thiamine deficiency can occur when a high carbohydrate diet is consumed without sufficient intake of Thiamine from foods like beef liver and other meats.  Veggies and fruits don't contain a lot of Thiamine.  Gluten free facsimile foods are not required to be enriched with Thiamine and the other B Vitamins.  

Supplementing with a B Complex and extra Thiamine is beneficial.

Hope this helps!

[Luls]

On 9/12/2022 at 6:20 PM, Worksop1 said:

Hi, so my son has been getting progressivly more tired, lethargic etc and has the start of a few neuro signs such as tingly fingers etc. He realised about 6 months ago that sliced bread was setting his stomach pain off and the pain was quite severe. He swapped to sour dough and he is fine with this. He is also fine with lasagne, pasta and breakfast cereal. He had a coeliac blood test done today as he is also loosing weight for no apparent reason and nothing else is showing in his bloods as being a logical explanation...but I cant help but think it just dosent sound like Coeliac. He has no bloating, diarohea, or anything else to make me think its Coeliac...what do you think?

Hello! I didn't have any gastro symptoms except some mild constipation that I put down to not drinking enough. I didn't have any sickness, diarrhea or stomach aches. I was just very very fatigued and had awful brain fog