Do I need a celiac diagnosis?

[TabithaJ]

Hi, I was diagnosed with IBS 40 years ago and have always had stomach issues.  It got so bad with diarrhea every time I ate that I went to the doctors who blood tested for celiac but it came back negative.  I decided to go gluten free and within two weeks the diarrhea stopped and I am now 7 months down the line, with very infrequent bouts of diarrhea.  I still get tummy ache most times I eat but I think its improving.  I still cant eat if going out as I get stress tummy from all the years of issues but am gradually getting better with it all.  As I know many people with celiac, that had initial negative bloods, I asked my doctor for an endoscopy to rule our celiac as I am concerned that I am still probably having some cross contamination and I realise that I need to be more careful if I am celiac as it causes damage rather than just unpleasant reactions!  My doctor basically said 'if the symptoms have gone away when you dont eat gluten, then just dont eat it'.  She doesn't see the need for an endoscopy.  As I have other issues such as unexplained infertility, vitamin D deficiency, inflammation of nasal passages - which I have all seen linked with celiac - I thought an endoscopy would be a good idea.  She has suggested a stool sample test to check for inflammation and said I dont need to eat gluten again to have this done.  She is also going to test my bloods as they haven't been done since the vitamin D deficiency was picked up on a blood test about 6 years ago.  Am I worrying too much about the cross contamination and should assume gluten intolerance rather than celiac as bloods were negative.  Thanks for reading!    

[trents]

Welcome to the forum, @TabithaJ!

It is certainly possible that you have IBS and also a gluten-related disorder. At least with celiac disease, IBS and Crohn's are more common than in the general population. It is also possible and even likely that you have other non-gluten food intolerances. Again, in the celiac population, developing additional food intolerances is very common. The most common offenders are dairy, oats (even gluten free oats), eggs, corn and soy. A number of foods have proteins that are similar to gluten and cause "cross reaction". Not to be confused with cross contamination. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) the same way they do to gluten.

Even if you have had NCGS (Non Celiac Gluten Sensitivity), some experts feel that can sometimes be a transition phase into celiac disease.

Indeed, you do outline some classic symptoms of celiac disease. Unfortunately, the only reliable way to test for celiac disease at this point is for you to engage in a vigorous "gluten challenge" and get retested. That would involve the consumption of 10g of gluten (equivalent to 4-6 slices of wheat bread) daily for several weeks. Your concern about cross contamination is valid, whether or not you have celiac disease vs. NCGS. The antidote for both is total abstinence from gluten and I'm afraid too many people take NCGS too lightly. Without a formal diagnosis of celiac disease, it is hard for many people to adhere to a strict gluten-free diet. It's just how the psychology works. 

Because your employ the term "bloods" to speak of serological lab work, I am assuming you live in the U.K. There may also be stipends, tax incentives and additional health care system supports available to you if you were officially diagnosed with celiac disease.

[Scott Adams]

Hi @TabithaJ, since you've already linked your symptoms with eating gluten, can I ask why you feel the need of a formal diagnosis? You've talked about the various symptoms you've had, which could be explained by undiagnosed celiac disease, but since you had negative blood tests for celiac disease it's possible that you may not have villi damage. I ask about the need for confirmation only because it sounds like you might stay gluten-free either way, and if that is the case it might not be wise to damage your gut again, as it can take months or years to heal, depending on the level of damage.

[Wheatwacked]

12 hours ago, TabithaJ said:

As I have other issues such as unexplained infertility, vitamin D deficiency, inflammation of nasal passages

You got to be in it to win it.  If you are eating gluten free you will test negative.  The tests look for damage and an immune response to gluten.  I agree with you doctor.

Unexplained infertility.  Deficient Iodine.  A Medium Urinary Iodine Concentration test will show it.  TSH and T4 will not show low iodine intake until you are very deficient.  Bread with iodine was the best source of iodine until 1970 in the US when they changed dough conditioner.  We limit use of iodized salt and the only good source of iodine left in the US is milk.

I take 500 mcg of Liquid Iodine a day.  Improvement in brain fog, hair, skin, nails, slow healing.

I was a mouth breather until I started GFD at 63 years old.

I have been taking 10,000 IU a day of vitamin D since 2015 to get my vitamin D to 80 ng/ml.  It took 6 years to get there.

"Choline also plays a role in regulating hormones and may be important for fertility. Research indicates that increasing choline may increase ovarian function and increase antral follicles, potentially helping women who are trying to conceive" Choline: The lesser-known pregnancy nutrient

[knitty kitty]

@TabithaJ,

Welcome to the forum!

Since you're doing so well on a gluten free diet, I wouldn't recommend undergoing a gluten challenge and endoscopy.  You would be wrecking all the progress you've made. 

I agree with your doctor about skipping the endoscopy.  Celiac damage can be patchy or out of reach, so the damage may be missed.  Your healing has already begun.   

Ask for a DNA test to check for known Celiac genes.  You don't have to consume gluten for a DNA test.  

Do get checked for nutritional deficiencies.  Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals while healing.  Remember, gluten free processed foods don't have vitamins added to them like gluten containing products do.  You need to take more than a daily multivitamin to boost your absorption.  

Keep us posted on your progress!

[TabithaJ]

Hi, thanks so much for all your responses, very informative and helpful.  Yes I am in the UK.  I felt the need for a diagnosis as I was concerned that I could still be causing silent celiac damage from cross contamination (toaster etc) without realising it. However from your replies it sounds like if gluten from cross contamination was still causing an issue, then maybe I would have symptoms.  I have started eating a granola which, although not labelled gluten free, it does not contain gluten cereals - it does say that it is made in a factory with gluten cereals, so again cross contamination could occur.  But I seem fine with it, so thats really great.  There is a cereal with barley malt extract that I eat occasionally too but as I do still have the very occasional upset tummy, I will keep a closer eye on if it is something I have eaten. I will push for the doctors to keep on top of regular bloods. Happily, the 6 year period of unexplained infertility after my first child, then naturally resolved and I had two more children 😍. I will continue to eat gluten free and stop worrying! The things I really missed in the beginning (fresh croissants when in France, Greggs Sausage rolls) don't appeal to me anymore, thankfully.  And for anyone in the UK, I have finally found a gluten free bread which is amazing - Marks and Spencers Oaty Loaf.  Thanks again for all your advice

[Russ H]

You should be careful with anything containing oats (such as granola) unless they are specifically gluten-free. Oats are often contaminated due to various factors including crop rotation, adjacent crops and the sharing of harvesting and milling equipment. Barley malt extracts can be up to 1000 ppm of gluten unless certified gluten free. Even though only a small amount would be used for flavouring, I think this should be avoided.

 

Thanks for the M&S suggestion.

[TabithaJ]

10 minutes ago, Russ H said:

You should be careful with anything containing oats (such as granola) unless they are specifically gluten-free. Oats are often contaminated due to various factors including crop rotation, adjacent crops and the sharing of harvesting and milling equipment. Barley malt extracts can be up to 1000 ppm of gluten unless certified gluten free. Even though only a small amount would be used for flavouring, I think this should be avoided.

 

Thanks for the M&S suggestion.

Thanks, I will be aware of the barley malt extract.  Deliciously Ella do a lovely gluten-free granola but its just all so expensive!  The M&S Oaty Loaf is £3.00 for a very small loaf, but so worth it to have a decent cheese and pickle sandwich ☺️

[trents]

But Tabitha, you are still having symptoms. You mention tummy aches in your first post. Is this due to IBS or celiac disease or NCGS? And you are playing a little fast and loose with cross contamination. You need to be all in on one or the other it seems to me. You need to be all in on avoiding gluten or you need to be all in on committing to the gluten challenge and retesting.

Edited October 23, 2024 by trents

[TabithaJ]

26 minutes ago, trents said:

But Tabitha, you are still having symptoms. You mention tummy aches in your first post. Is this due to IBS or celiac disease or NCGS? And you are playing a little fast and loose with cross contamination. You need to be all in on one or the other it seems to me. You need to be all in on avoiding gluten or you need to be all in on committing to the gluten challenge and retesting.

I am a bit all over the place in my thinking since seeing the doctor. She basically said 'if you're better not eating gluten then what's the issue'.  I said I was concerned about cross contamination and she said 'but if you're not getting symptoms then why are you concerned'.  You're right though, I do need to commit either way.  I will go back to 100% gluten-free products and stop cross contamination - if the tummy aches improve then I get my answer.  I still wont know if its celiac or NCGS but I don't suppose that matters if I stay gluten-free.  Thanks for your advice.

[knitty kitty]

@TabithaJ,

Did your Vitamin D deficiency coincidence with your period of infertility?

Celiac Disease causes malabsorption of essential nutrients.  It's rare to have a deficiency in just one vitamin.  

Do get checked for nutritional deficiencies.  Do talk to your doctor about supplementing with vitamins and minerals while healing.  

Have you had a DNA test to check for any known Celiac genes?  If you do have the genes, you will want to have your children checked for Celiac Disease as well.  Starting them on a gluten free diet can lower their risk of developing Celiac Disease.

[Wheatwacked]

Do you have an official diagnosis of Celiac Disease?  I understand that there are tax and financial benefits to a diagnosis of Celiac Disease in the UK.

[TabithaJ]

19 minutes ago, knitty kitty said:

@TabithaJ,

Did your Vitamin D deficiency coincidence with your period of infertility?

Celiac Disease causes malabsorption of essential nutrients.  It's rare to have a deficiency in just one vitamin.  

Do get checked for nutritional deficiencies.  Do talk to your doctor about supplementing with vitamins and minerals while healing.  

Have you had a DNA test to check for any known Celiac genes?  If you do have the genes, you will want to have your children checked for Celiac Disease as well.  Starting them on a gluten free diet can lower their risk of developing Celiac Disease.

The vitamin D deficieny was picked up in 2019 although looking through my test reports on the NHS app recently, I saw that they were low in 2016 but it wasn't picked up.  The period of infertility was between 2000-2006.  The doctor has agreed to blood test for levels which is good.  I haven't had a DNA test but will look into it.  One of the reasons for wanting a diagnosis is that my adult son has been struggling with similar symptoms as me and I have advised him to go gluten free and he is so much better.  My youngest daughter also seems sensitive to gluten so is eating more gluten free these days.

23 minutes ago, Wheatwacked said:

Do you have an official diagnosis of Celiac Disease?  I understand that there are tax and financial benefits to a diagnosis of Celiac Disease in the UK.

No,  I do not have a diagnosis and am not aware of or ever heard of any tax or financial benefits?   

[Wheatwacked]

NHS support for patients with coeliac disease

Lastest reports are that 40% of first degree relatives to a Celiac Patient have Celiac Disease

[TabithaJ]

32 minutes ago, Wheatwacked said:

Do you have an official diagnosis of Celiac Disease?  I understand that there are tax and financial benefits to a diagnosis of Celiac Disease in the UK.

I googled....In my area, under 18's and pregnant women can get certain breads and flour mixes on prescription.  NHS prescriptions are free up to age 16 (16-18 if still in education) and for pregnant women.

2 minutes ago, Wheatwacked said:

NHS support for patients with coeliac disease

Thanks, good to know - my friends daughter has recently been diagnosed celiac so would be eligible for certain breads on the NHS