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Am I Intolerant To Something Else?!


lischro

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lischro Apprentice

Hi guys,

You've been extremely helpful to me in the past and would just like to run through some things to see if anyone has some insight. I have been gluten free for about 3 months. I haven't really noticed anything getting better. My main issues are hypothyroidism, chronic constipation (the only thing that helps is 4x the regular dose of miralax), weight gain, extreeeeeemeeee bloating in my stomach... tired and achey all the time. My boyfriend complains that I just "never actually feel good." Well, that's true. oh, and I'm a 24 year old female.

Anyway, I've had great success being gluten free (no cheating and I live alone so I cook for myself) but now I'm more and more aware that something else seems to be going on. What I have now... especially bothersome during the past week is a strong, burning sensation in my right knee. It's mostly in my knee but I also feel it run down my shin a little ways. Still extremely bloated, achy and my hands and feet get tingly a lot.... it's true, I just never feel good.

Like many of you, I'm not diagnosed, I've seen doctors for the past 3 years and they can't/won't help...

I started to suspect caesin? but I don't know much about that.... Any ideas?

Thank you for reading!


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txplowgirl Enthusiast

Hi There, well to start off you could still be having withdrawals but then a gain it might be dairy, or soy. Just a suggestion, I would drop the dairy and possibly soy for a couple of weeks then add it back in. The tingling in your hands may be a vitamin B-12 deficiency. Anyway, just a thought.

dilettantesteph Collaborator

It could also be from cross contamination. Have you seen Tricia Thompsons study about the contamination of gluten free grains? You could try cutting out grains for awhile. I sort, wash and grind my own.

RiceGuy Collaborator

Adding to the comments thus far, I'd suggest some nutritional supplements for the tingling and such. A magnesium supplement can be very helpful for the tingling, and may help the knee as well. A deficiency of magnesium is also common with Celiac, and can lead to C. Start with 200-400mg, and increase by about 200mg every 5 days until you either get relief, or your stools become too loose (in which case back the dosage down). I'd also recommend a sublingual methylcobalamin tablet for the B12, at least 1mg, but 5mg may be more helpful. A good strong co-enzyme B-complex can also be helpful.

A digestive enzyme supplement can be helpful for the bloating. Look for one derived entirely from microbes, as these can withstand the acidity of the stomach, and are generally gluten-free unless there is some additive. NOW Foods and Doctor's Best both make one of this type.

Everyone is different in how long it takes to respond to a gluten-free diet. It took about six months before I noticed anything other than the immediate dry throat I'd get from wheat.

Mari Contributor

You've gotten some good nutritional advice and hope it helps, but you may want to be tested for Lyme Disease which is common in Celiacs. If the bloating continues there are some good medical tests and treatments which cold help, some people have either a Metametrix enteric panel or a Diagnos Tech enteric and saliva panel to find out if you have organisms which need to be treated. These panels look for indications of harmful bacteria,, yeasts, parasites and some metabolic problems. I usually use alternative methods but as Drs learn to use the newer diagnostic tests and treatments people report that they are satisfied with the results. Bloating is caused by bacteria and yeasts feasting on the food you eat.

Mama Melissa Enthusiast

hey riceguy, im about 6 1/2 weeks into my diet and i do see some changes especially gi wise but i realise sometimes after i eat a meal i get such a dry throat and sometimes a cough and my chest will feel heavy soo weird i swear i eliminated all gluten soo frusterasting

rustycat Rookie

Dairy causes those symptoms for me. It might be the casein in dairy, though I'm not sure. The sore knees usually last a couple of days. The C and the fatigue can last longer.

Best wishes and I hope you find the cause.


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    • Heatherisle
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    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
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