I don't know how/if I should be tested for Celiac - help?

[Bexxiic-NZ]

Hi everyone, sorry I'm very new here and honestly have ZERO idea what I'm doing, so just hoping for thoughts/advice/expertise. Really sorry for the long post...

I'm 28 years old and have almost every symptom of celiac disease. I want to get tested but my understanding is that to do so I'd need to eat gluten for around two weeks every day? This simply isn't possible for me as literally a crumbed chicken tender (for example) will put me out of action for several days - I'll have severe stomach cramping, diarrhea, fatigue, and usually a headache that lasts about three days. On top of this I will be severely bloated and feel very ill. Occasionally instead of diarrhea I will have constipation (I mean really, body, can you pick one??) haha

I did a keto diet to lose weight about four years ago and inadvertendly cut out Gluten. After a few months I was happy with my progress (and my energy levels, wow!) and decided to go back to a normal diet. I distinctly recall being excited to eat bread rolls because I'd missed them so much. I had two, and maybe two hours later I had a wave of stomach cramps that landed me in hospital because I was in so much pain I was almost in tears. I've cut out and reintroduced gluten a few times since hoping to be wron but every time has similar results. I don't seem to react badly with anything else  

I do occasionally get mouth ulcers but not too often, but I have noticed that I also get a bit of a rash above my bottom or on the backs of my calves (It looks identical to research I've done on dermatitis herpetiformis but idk if that's actually the issue).

I was diagnosed with ADHD a few years ago when I was about 20, however the symptoms weren't new; I went to see a psychiatrist to confirm my suspicions that I've had it most if not all of my life. 

I have had blood work in the past and I'm always told that I'm perfectly healthy EXCEPT my B12 count is low so I'm usually borderline anaemic. Occasionally iron and zinc were low as well. 

I have always struggled with fatigue, it's particularly difficult to get out of bed every morning and I can easily sleep through an entire weekend, only getting up to eat/toilet etc.

My mother definitely has a wheat problem but had never been diagnosed; she just avoids it.

 

TLDR. I believe I've had celiac all my life.My symptoms (when I've had Gluten) in full are below. Please help me figure out what to do?

* Gas/bloating/diarrhea, sometimes constipation
* Fatigue (often very bad) and headaches
* Severe cramping 2hrs - 2 days after eating gluten
* Nausea
* B12 / zinc deficiency
* Rashes (at one point I had full body hives but I think that was unrelated). Usually on back of calves and 
* Weakness in my hands and feet, and very poor circulation in general
* Occasional mouth ulcers (again likely unrelated though)
* Occasional bouts of vertigo/dizziness
* ADHD

Any advice appreciated as honestly I'm very lost!!

Thanks,

Rebecca x

[Bexxiic-NZ]

33 minutes ago, Bexxiic_NZ said:

* Gas/bloating/diarrhea, sometimes constipation
* Fatigue (often very bad) and headaches
* Severe cramping 2hrs - 2 days after eating gluten
* Nausea
* B12 / zinc deficiency
* Rashes (at one point I had full body hives but I think that was unrelated). Usually on back of calves and 
* Weakness in my hands and feet, and very poor circulation in general
* Occasional mouth ulcers (again likely unrelated though)
* Occasional bouts of vertigo/dizziness
* ADHD

 

Forgot to mention I also get heartburn/acid reflux. Not sure if that's a related symptom but the timing would make sense!

Also not sure if this would be something completely different but I noticed that I get out of breath very quickly when I go on walks/runs. Like my body feels fine, I don't feel physically tired, but I'll be panting for breath. Is this normal for celiac or should I look elsewhere about this?

[Scott Adams]

Welcome to the forum! Actually to get properly screened for celiac disease you would want to do both a blood test, then a biopsy, and you would need to eat gluten daily for at least 12 weeks before the blood test, and then at least 2 weeks prior to an endoscopy:

But it sounds to me like you have your answer--you at least are gluten sensitive based on your symptoms, and the fact that they go away when you avoid gluten, and you possibly have celiac disease. Why is getting a formal diagnosis so important? If you have such bad symptoms when you eat gluten, it might not be worth the health risks to get a formal diagnosis.

Perhaps consider a genetic test to see if you have a genetic marker for it? Be sure to have your first degree relatives get screened.

Also, you should check with your doctor about taking a good vitamin and mineral supplement that includes a b-complex, as well an an iron supplement.

 

[Bexxiic-NZ]

2 minutes ago, Scott Adams said:

Why is getting a formal diagnosis so important? If you have such bad symptoms when you eat gluten, it might not be worth the health risks to get a formal diagnosis.

 

Thanks Scott! That helps 😊 I guess it's probably not, I just feel uncomfortable when eating at a restaurant and I ask for gluten free, they will often ask "are you celiac?" I say no because I'm not willing to make them do the extra work if I'm not sure, I guess.

If I have genuine reason to believe that it's celiac at least I can feel better about that.

I'll ask about the blood/gene tests and talk to my mother about getting hers done as well!

[RMJ]

To keep yourself healthy I would either tell the restaurant that you have celiac or a wheat allergy. It isn’t an allergy but the term is one that restaurants seem to understand.

[Scott Adams]

18 hours ago, Bexxiic_NZ said:

Thanks Scott! That helps 😊 I guess it's probably not, I just feel uncomfortable when eating at a restaurant and I ask for gluten free, they will often ask "are you celiac?" I say no because I'm not willing to make them do the extra work if I'm not sure, I guess.

If I have genuine reason to believe that it's celiac at least I can feel better about that.

I'll ask about the blood/gene tests and talk to my mother about getting hers done as well!

Just so you know, there have been studies done and even if a restaurant has a gluten-free menu, you still run a pretty high risk of getting small amounts of contamination. When I eat out I take a couple of AN-PEP enzymes beforehand (GliadinX makes one which is a sponsor here--there are many studies that show this enzyme will break down small amounts of gluten in the stomach) just in case.

Also, I really need to do an article on the BS that surrounds what I believe to be a lame, and completely idiotic question that many restaurants now ask when you order, even if they have a gluten-free menu: "Are you celiac." On one had I'm happy they even know the word, and have some idea of what it means, as raising awareness has been a goal of this site for over 25 years. On the other hand, if a restaurant has a gluten-free menu, or items on a menu that are marked "gluten-free," then they should just be gluten-free, right? Why the extra question? You either offer it, or you don't. I can understand a restaurant that doesn't have a GF menu, or items marked as such asking this question, but I get asked this now 75% of the time even if they have it marked GF on their menu. Obviously this is obviously a trigger for me, and probably is for many others as well.

[Bexxiic-NZ]

3 hours ago, Scott Adams said:

if a restaurant has a gluten-free menu, or items on a menu that are marked "gluten-free," then they should just be gluten-free, right? Why the extra question? You either offer it, or you don't. 

Given my situation of uncertainty, I understand what you mean, but I personally find it really helpful; I think the concern is that because they're not often a dedicated gluten free resturant, it's more about covering their butts if there is cross contamination, which (like you stated) is a fairly high risk. I see a lot of places have gluten free but note that they recommend if you have a serious allergy etc that you don't eat there, which I think is good because at least you know the risks and if it's worth giving it a shot? I don't know that's just my perspective but I'd rather have more options, personaly, and take a risk here and there, that for resturants not to offer it at least