Gluten-free-01

Hello Lakergirl, to be honest if I were in your situation, I would reject the endoscopy, at least for the time being. You said you have mycoplasma pneumonia and take antibiotics and on top of that you are in pain caused by the peripheral neuropathy now. So I think this is not a good time to stress yourself even more with endoscopy/biopsy. Both the pneumonia and the peripheral neuropathy are probably related to celiac.

Open Original Shared Link

Open Original Shared Link

So now is not a good time for a gluten challenge, in my opinion.

That said, I don’t really know how important a formal diagnosis is to you. I agree with ravenwoodglass that having a formal diagnosis can help you in many ways. So the decision is up to you..

I hope you feel better soon.

1 hour ago, ML123 said:

Thank you for your reply!

You're welcome

1 hour ago, Feeneyja said:

But I can tell you that NCGS is no laughing matter. I do not buy that it is "only a sensitivity" and doesn't cause damage.

I totally agree.

4 hours ago, ML123 said:

Does anyone have experience with NCGS? Any helpful insights?

Yes, I have NCGS. My blood tests were negative and I didn’t pursue an endoscopy/biopsy. It was my personal choice – the main reason was that I don’t trust doctors in my country enough to let them perform it. There are risks involved – e.g. small intestine perforation. They ask you to sign an informed consent before the procedure, so even if something happens, it’s never their fault, of course (!).  

So, yes, I may be an undiagnosed celiac, in fact.

I’ve decided not to worry about not having a formal diagnosis. I stick to the gluten-free diet, don’t cheat and like cooking so I actually enjoy the food I eat and don’t feel deprived really.

As Feeneyja said, it is not uncommon to have neurological symptoms as a NCGS. In my case these were migraine headaches, diziness, vertigo, brain fog, fatigue, tingling in my left arm, anxiety and irritability.

Going off gluten has helped a lot!  

Hi ML123, could you give us more details? 

2 hours ago, ML123 said:

Testing indicated I do not have celiac disease.

Did they run a complete celiac blood panel? Endoscopy/biopsy?

(Blood tests = Gliadin IgG, Gliadin IgA, Endomysium IgG, Endomysium IgA, Tissue transglutaminase IgG, Tissue transglutaminase IgA, Total IgA)

2 hours ago, ML123 said:

another "gluten" test on my own

What do you mean, please?

2 hours ago, ML123 said:

Waiting on blood work to verify.

NCGS can't be verified by bloodwork..

This is a great forum (helped me a lot) and the members have amazing knowledge, but I think more info is needed 

Thanks  

11 minutes ago, Jmg said:

Thanks that's very thoughtful

I very rarely get the occluded vision now, when it does occur I think it's down to cross contamination or a gluten exposure of some sort.

I've had many diabetes checks over the years and so far so good...

You're welcome  It was just a suggestion. I'm glad to hear that your vision has improved and that you don't have diabetes! 

Plumbago, thank you again for all this information  It's very useful. 

4 minutes ago, plumbago said:

Only for some tests. You had several.

 

Tissue Transglutaminase Immunoglobulin G

In reaction to TTG, IgG is produced. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from 3-6 months, sometimes up to a year, preceding test.

Tissue Transglutaminase Immunoglobulin A
The enzyme TTG deamidates gliadin (a broken-down component of gluten). In reaction to the presence of TTG, the antibody immunoglobulin A (IgA) is produced. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.

Plumbago

Thank you, plumbago. This is very interesting, I didn't know that. Would you pls give me a link to the source of this info?

Btw I've been off gluten for a month and feel much better. So, I act as if the test was positive anyway.    

On 20. 8. 2017 at 9:15 PM, Jmg said:

Most of those I get also. Not so much the migraines, although I get what may be retinal migraines, not sure about that.

Matt, do you still have the vision problems?

I’ve been reading about diabetes, and there’s a condition called diabetic retinopathy. The symptoms are similar to those of retinal migraines and also reminded me of the vision issues you mentioned in your R.C. post. So I just thought I would let you know.

PS: I wouldn’t wish diabetes on anyone, of course.

Open Original Shared Link

37 minutes ago, Victoria1234 said:

Help! 

It's STILL happening!

When I take an anti-D med, it stops me up for 2 days, then comes back....

I'm so confused. This has never happened to me. Could it be I suddenly shouldn't be eating fruit? 

Do you take any vitamin/mineral supplements or medications? It can be a side effect of magnesium citrate, for instance. I take magnesium (in the form of citrate) with B6 and can tolerate only half of the recommended daily dose - otherwise the side effect is stomach cramps/pain and D

I hope you feel better soon.     

Severe complications of undiagnosed/untreated diabetes maybe?

It is hard to say. I'm not a doctor. I hope they have ruled this out.. it is one of the most common blood tests.. but you never know.

Rachel, I hope your father gets well soon.

 

I do have one thought, it might be some kind of bacteria, or fungi in your mouth that is growing and feeding on stuff. 

Exactly - e.g. candida. 

OP: This is an article about 'oral candidosis'.

Open Original Shared Link

You can also google things like 'candida overgrowth', 'candida diet' etc.

I’m sorry you don’t feel well.. it seems like you have many different health problems. If celiac disease/gluten sensitivity is the root cause, all these symptoms might be related.

You said you haven’t come off gluten 100%, but don’t want to do a gluten challenge. So, I think you should go 100% gluten free and see if it helps. There is a difference between ‘gluten free’ and ‘gluten light’, and many members of this forum say they react even to the smallest amount of gluten!

Or, you can get tested but risk a false negative..

I think it’s actually a good thing that your daughter doesn’t want to stop eating gluten now because at least her tests will be relevant and you won’t have to worry about false negatives.

Good luck

 

I know it's a genetic disease but I'm not sure if it's that or another gluten intolerance. I did think it would show up in an gluten allergy test and I would have to go from there to see what kind of gluten intolerance it was. 

There are 3 different conditions: Celiac disease, Non celiac gluten sensitivity and Wheat allergy. 

Celiac disease - blood tests:

Gliadin IgG 

Gliadin IgA 

Endomysium IgG 

Endomysium IgA 

Tissue transglutaminase IgG 

Tissue transglutaminase IgA 

total IgA 

+ intestinal biopsy 

NCGS: there are no tests available - symptoms getting better on the gluten-free diet 'is the test'

Wheat allergy: blood test - another immunoglobulin class is used - IgE; skin prick tests for food allergies are used as well

I’m in a similar situation. My blood tests were negative, but I have symptoms that are related to gluten consumption. And I also have a family member (blood relative) who has celiac. I don’t rely on the tests because I’d already been off gluten for approx. 2 weeks prior to testing. Thanks to this forum, I’ve found out that many people make this mistake.  

Well, I’d be happier if I had an official diagnosis.. maybe I could have it if I did a gluten challenge.. but I don’t really want to do it. I’d say the diet is not a problem for me as I’m not tempted to cheat and I like cooking so that makes things easy   

As for the withdrawal symptoms.. yes I’ve had stomach cramps, headaches and lightheadedness too. My headaches/migraines have almost disappeared.  I still feel lightheaded though.. feel like I’m on drugs most of the time.. haven’t figured that out

2 hours ago, HARRYE10 said:

I have been off gluten since Wednesday night but I still haven't been feeling right.

It’s been 5 days. Withdrawal symptoms can last for weeks – be patient

Good luck

47 minutes ago, AmyHauchtest said:

Turning to the question of whether to try to conceive - I guess I'm wondering if I can simultaneously go gluten free and attempt to get pregnant safely. I understand there isn't a lot of literature on the topic but would be interested to hear if anyone out there has done it successfully or knows someone who did. I very much want a bigger family, having a stillbirth then a miscarriage has not dissuaded me. In many respects I'm relieved to have a celiac disease diagnosis so I can at least address the problem. My motivation to live gluten free is high, I just wonder if waiting a matter of months to conceive will improve my chances of carrying a baby to term.

Amy, have you had your thyroid checked? Good thyroid function is also necessary..

1 hour ago, Lila2017 said:

Around that time I was at a conference where the only meal choices were bread, pasta, pasta or pasta so I had a plate of pasta and it caused a huge giant migrane for the rest of the day. I started looking into gluten and thought I would try out going gluten free. OH. MY. GOSH. I feel like I have my life back!

I just wanted to say that this is exactly what happened to me! The only difference was that I'd cooked the pasta myself  So, I've been 100% gluten free for about a month and things have really improved for me. I know that migraines can be terrible and they can really be a symptom of celiac/NCGS. 

5 hours ago, frieze said:

there is fine, and there is fine.  get copies of results, ASAP.  WNL, is not always "fine".

Just a few more ideas: I agree that it's better to have your own copies of the results, if possible. You could see 1) which tests exactly were run and 2) if the results were really 'normal' or maybe borderline low/high for some of them. 3) We don't know when exactly you were tested.. if it was a year ago or so, some of the levels might have changed. 4) Doctors can't be trusted 100%. If a doctor is very unprofessional (like my current GP :-) ) then it's just better to see the results yourself and interpret them yourself.  

Good luck.

25 minutes ago, squirmingitch said:

There is nothing wrong with your English! You've been quite understandable. 

Thank you.

1 hour ago, David55 said:

But luckily, I got the appointment with the allergist in 3 weeks now. I am going to discuss my symptoms with the allergist and see what she thinks and reccomends. Do you think they would run those blood tests? I already got an upper endoscopy and they did a biopsy and it came back negative for Celiacs, so do you think it is worth still getting the blood tests? 

I guess an allergist will probably run the 'wheat allergy' test (IgE) and/or skin prick tests for food allergies. In general, celiac disease blood tests (IgA, IgG) are usually run by gastroenterologists or GPs. 

Btw I think my English is terrible so maybe I shouldn't give any more advice :-)    

David: The most important thing is not to panic. You said something about college so I think you're young - that makes things easier because the earlier you find out you have this intolerance/allergy/disease the better. 

Don't worry about other people - most people live on gluten foods, love these foods and are not able to comprehend that it is literally poison for others. I won't even go into people commenting on body weight.. you're so skinny.. stuff like that (my personal experience :-) ) The goal is to ignore them.

The realization of the condition/diagnosis can be a bit of a shock - that's normal. As Matt (Jmg) said, it's important not to go into denial about it. This ruins everything.

The diet as such is rescritive but not unrealistic. Compared to other diets, like strict low carb diets (i.e. no sugar, no carbs at all, no yeast etc.), it's easy.        

(Sorry about my English.)

15 hours ago, sddave said:

Anyone have any suggestions?

What do you drink in the morning? Could e.g. coffee be the reason you don't feel well after breakfast?

Do you take any vitamin/mineral supplements (especially in the morning)? Could this be a side effect? E.g. not everyone tolerates magnesium citrate.   

On 21. 8. 2017 at 8:34 PM, David55 said:

1) What tests should I ask for? I think that I have a gluten intolerance or a sensitivity.....

Hi David, there are 3 different conditions basically: Celiac disease, non celiac gluten sensitivity and wheat allergy. 

Celiac disease - blood tests:

Gliadin IgG 

Gliadin IgA 

Endomysium IgG 

Endomysium IgA 

ttg IgG 

ttG IgA 

total IgA - this is not a celiac disease test as such but your total IgA level - some people are IgA deficient so it has to be checked so that you can be certain that the results of the other tests are valid

YOU HAVE TO EAT GLUTEN DAILY FOR THESE TESTS TO GIVE ACCURATE RESULTS. 

NCGS: there are no tests available - symptoms getting better on the gluten-free diet 'is the test'

Wheat allergy: another immunoglobulin class is used: IgE   

On 21. 8. 2017 at 8:34 PM, David55 said:

2) Do my symptoms match up with a person with a gluten intolerance?

Yes. Headaches, fatigue, nausea, GI issues are common. I'm not so sure about nasal congestion and being feverish - maybe allergy more likely than celiac disease/ncgs for these two.

(Sorry about mistakes - not a native English speaker.)

Victoria: I think sd can also be caused by candida so I guess a 'candida diet' could help. No sugar etc. 

2 hours ago, Victoria1234 said:

Did you find something else to help it? I've got sd also and was given a shampoo and cream.

No, not really.. It wasn't very severe and eventually went away without any special treatment. The Dr. said it might have been caused by stress.   

6 hours ago, Jlewisrn said:

Not out of relief but because it's another doctor (and more money) to not know what's wrong with me. This rash is driving me mad. 

Please keep in mind that ‘regular’ doctors, unlike doctors of functional medicine, rarely try to find the root causes of their patients’ problems. I had seborrheic dermatitis a few years ago and, as expected, I got a prescription shampoo and a liquid solution and that was it.

I still respect doctors in general, though, because in many health related situations the ‘classical medicine’ approach is the best/saves your life etc. It really depends on the condition. Gluten sensitivity is much more related to the functional medicine approach, in my opininon.

Even though you haven’t been diagnosed as a celiac a gluten-free diet may still help you because you may be non celiac gluten sensitive.

(Sorry if there are any mistakes – not a native English speaker).

35 minutes ago, mary14889 said:

Your experience is exactly the same as mine.  I could have dictated the story and  the whole list of symptoms up to More Info.  I am also sensitive to dark chocolate.  I went gluten-free on my own and was tested a few weeks after going gluten-free and my results were negative.  I ate a couple of slices of bread the night before seeing the GI and getting tested so he could hear my stomach rumble.  He said the only unusual finding was eosinophils in my intestinal tract (I think he did a sigmoidoscopy- we were probably both clueless about needing an endoscopy.  That was 19 1/2 years ago).  I was tested for PCOS because my sister has it.   My test was at least 10 years  after going gluten-free.  I was told there are a few cysts but not enough to call it PCOS.  No thyroid issues.   My symptoms all evaporated within two weeks of going gluten-free!  It was life changing.  I challenged with gluten a couple of times and became convinced.  As with others, I 'm surely more sensitive now to the tiniest gluten accident.  I've been healthy as an ox every since (knock on wood) and feel extremely lucky to have figured it out - myself without any help from my clueless doctor- but wish I could have been spared 30 years of migraines - migraine was the worst symptom until GI problems started full blast (literally) after a double round of antibiotics.  

Thanks Marry. Your story is very similar indeed. I totally agree that the migraines are the worst symptom - the pain was terrible and there were times when I was almost convinced that I had a brain tumor.

I'm glad you replied to my post because at least I can see that it's not all just in my head (I feel paranoid sometimes) and see that all these issues can really be interconnected and gluten related.