Gluten withdrawal

[Misscshell24]

Hi! New to the group and hope I'm posting in the right place.

My son is 12 year old and has Autism and Celiac disease.  He was diagnosed with both when he was 3 years old and has been gluten free since. 

Because it is genetic, I also got tested for Celiac and was borderline, one point under being out of normal reference range.  I recently have been having daily migraines, desperate for relief I went gluten-free 10 days ago.  Since my son has been gluten free for years and was very ill when he was diagnosed, I didn't know about Gluten withdrawal, which I believe I have. Severe nausea, fatigue, vomiting, etc.  I basically feel like I've had the stomach flu.  I have just read that it should be slowly tapered down, I quit cold turkey as it was an easy transition because of my son. But this is awful and I'm not certain I'll feel better in the end.

So now I'm wondering if I should go back on gluten and slowly wean off or just cut back? Will reinstating gluten help with the symptoms at this point or is it too late?  Thoughts, advice, suggestions welcomed. 

Thanks!

 

[SLLRunner]

When you noticed the migraines, did you let your doctor know? 

Rather than just cutting out gluten to see if it solves your migraines, I suggest talking to your doctor about getting tested for celiac since you said you were diagnosed as "borderline". However, to have an accurate result for testing, you need to continue eating gluten.

[Misscshell24]

Thank you. Yes, I did talk with my doctor about my migraines. I've tried many different medications, prescribed and natural, acupuncture, massage, essential oils, magnesium, butterbur, B2, Botox, and more. All to no avail. I have not recently been tested for Celiac, but know through experience that I would need to be on gluten to be tested. 

So in a desperate attempt for relief, I thought I'd try gluten free, unaware of the withdrawal. Now I am feeling worse and not sure what to do. I have searched Google to see if adding gluten back would help with the withdrawal and how to properly wean off gluten and haven't been able to find info, so thought I'd try here. Thanks again. 

[squirmingitch]

Medical protocol is that all 1st degree relatives (you) of a dx'd celiac (your son) should get tested for celiac every 2 years, sooner if symptoms present.

For celiacs, going gluten free and then going back on gluten for a "gluten challenge" for celiac testing is a major gaff. We almost always have much more severe symptoms than we did before we ever went gluten free in the first place.

I don't know where people are getting this stuff about weaning off of gluten but this is the second time tonight that someone has asked about it. Celiacs don't wean themselves off of gluten, they just go cold turkey.

[Misscshell24]

It seems as thought I am offending people, that was not my intention.

I understand Celiac disease and the importance of going cold turkey with a Celiac diagnosis.

The title of this support site is Celiac disease and Gluten-free diet support and since my son has Celiac and I am trying a gluten-free diet, too, I thought it would be a place to possibly get some answers or help.  Sorry for posting.

As far as the weaning, all that I've read about going gluten-free (not for Celiac purposes) likens withdrawal to opiate withdrawal and suggests slowly cutting it out of your diet to lessen symptoms.

Thank you for your responses. Hopefully I'll figure it out and feel better soon.

 

[kareng]

I don't think there is actual science for the opiate theory.  Sometimes, when a person goes gluten-free, they change their diet radically and that can be an issue.  Maybe more fat, less fat, more protein, less fiber, etc.   So that, along with healing, you won't feel fabulous right away.

[squirmingitch]

I'm sorry if my response sounded unsupportive; that was not my intent. I am frankly befuddled about this weaning off business. I was not shouting at you when I said, "I don't know where people are getting this stuff about weaning off of gluten but this is the second time tonight that someone has asked about it. Celiacs don't wean themselves off of gluten, they just go cold turkey." I am simply stating facts and expressing my bewilderment.

I posted about the importance of all first degree relatives getting tested in case you weren't aware of that. And I posted about the effects of going gluten free and then going back to gluten if one suspects they do have celiac in an effort to inform and help yourself and others understand the consequences they may face by such actions.

I suffered blinding migraines for well over 26 years. Little did I know they were because of celiac. I had never even heard of celiac. The doctors never questioned or ran any tests as to why I was having these migraines. Guess what? I haven't had a migraine in years now. It was all celiac. 

You very well could be celiac yourself especially in light of your sons diagnosis. You said you have not recently been tested for celiac. I would urge you to go get tested because the migraines could be telling you that you are no longer that one point under being out of normal reference range. If you continue with the gluten free experiment then when/if you go back to gluten for testing then I just don't want you to be unable to complete the gluten challenge because you are having such a severe reaction.

It may take months or a year for the migraines to subside for you if they are due to celiac. To the best of my recollection, mine did not subside for around a year after I had gone gluten free. Now, we have to consider that everyone is different so you may get relief sooner or it may take longer. No one can say for sure.

[squirmingitch]

I forgot to say that yes indeed, even for celiacs, gluten withdrawal is sort of like opiate withdrawal. Not that I know what opiate withdrawal is like first hand thank goodness but it is certainly not fun. But until tonight, I have not heard of anyone recommending weaning oneself off of gluten.

[Misscshell24]

It sounds like the best thing to do would be to go back on gluten and get tested, as it's been almost 2 years since my last test and I've had A LOT of health issues since.  And I didn't know that I should be retested every couple of years.

If I have Celiac, then of course go cold turkey and tough it out.  If I don't have Celiac, then maybe try slowly cutting back and see if I notice any improvement.

Thank you for taking the time to reply and clarify. 

[cyclinglady]

Just wanted to add that you can get the genetic testing done too.  If you do not have the celiac genes (maybe your son's came from his father's side), you will not need to ever get the antibodies testing again.   

[Misscshell24]

I am not familiar with gene testing.  How would I get that done, do you have to be on or off gluten, and is it reliable?

 

[cyclinglady]

53 minutes ago, Misscshell24 said:

I am not familiar with gene testing.  How would I get that done, do you have to be on or off gluten, and is it reliable?

 

Yes, it is reliable.  You do not have to have to be on gluten.  Your genes never change!   Ask your doctor for the test. Your insurance should cover it.   If you do not have the genes, you will never get celiac disease and you won't have to do the testing for antibodies again!  In your case, get the antibodies testing done too.  

Remember, about 30% of the population carries the celiac genes.  Only a tiny percentage ever get celiac diseases. You have to have an environmental trigger (like divorce, illness, etc.)

 

 

[Misscshell24]

Interesting.  I definitely have the environmental factor. In the last two years I've had four emergency abdominal surgeries (ovary torsion and cyst removal, lap chole, bowel obstruction, and exploratory surgery), months in the hospital, a severe abdominal infection for seven months, and benzo withdrawal/recovery.  One thing right after the other, I haven't had any breaks where I've been healthy and felt well in two years. Basically, I'm lucky to be alive.

I'll ask my doctor about the test.  Thanks!

[cyclinglady]

24 minutes ago, Misscshell24 said:

Interesting.  I definitely have the environmental factor. In the last two years I've had four emergency abdominal surgeries (ovary torsion and cyst removal, lap chole, bowel obstruction, and exploratory surgery), months in the hospital, a severe abdominal infection for seven months, and benzo withdrawal/recovery.  One thing right after the other, I haven't had any breaks where I've been healthy and felt well in two years. Basically, I'm lucky to be alive.

I'll ask my doctor about the test.  Thanks!

When was your son last tested for celiac antibodies?  That is part of follow-up care.  

 

[squirmingitch]

4 hours ago, Misscshell24 said:

Interesting.  I definitely have the environmental factor. In the last two years I've had four emergency abdominal surgeries (ovary torsion and cyst removal, lap chole, bowel obstruction, and exploratory surgery), months in the hospital, a severe abdominal infection for seven months, and benzo withdrawal/recovery.  One thing right after the other, I haven't had any breaks where I've been healthy and felt well in two years. Basically, I'm lucky to be alive.

I'll ask my doctor about the test.  Thanks!

The stress & surgeries/illnesses you've been through put you squarely in the category of triggering celiac to present.  Particularly the types/location of problems you've been having are setting off bells in my head.

I will disagree with cyclinglady on one point.:

If you don't have the DQ2?DQ8 gene you will never have celiac.

There is still a very, very small percentage of people who don't have those genes who do actually have celiac but it is a very rare occurrence.

Have you had a complete thyroid panel done lately? If not, add that to the list of tests to get done.

[frieze]

ten days off, probably thru the worst of it, if you NEED the positive testing for some reason, yes. you would need to go back of gluten.

[Misscshell24]

My son was last tested last year.

I went back on gluten last night.  I've been having crackers as that's all I can keep down.  I thought I might feel better having gluten again, but still feel very sick with nausea and vomiting. Haven't been able to eat in over a week.  Hopefully I feel better soon, I really messed myself up.

I will ask my doctor for both tests. Thanks.

[squirmingitch]

How about trying bone broth? It's very gentle on your gut.

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Some people find it easier to have their gluten crackers just before bed. That way they can sleep through the worst effects of it.

You sure have a lot on your plate right now. You need some hugs.

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