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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 Enthusiast

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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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