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No Gi Issues--What Where Your Symptoms?


NE Mom

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NE Mom Apprentice

Hi,

I was dx'd with Fibro a few years ago. Decided to try a gluten-free diet to see if I felt better. I noticed immediate improvements with the brain fog and exhaustion. The muscle pain took longer. I had the blood work done prior to going gluten-free and it was all negative. I believe I've been glutened a couple of times because the above symptoms returned.

I decided it was time to test the gluten-free diet and see if it was really the culprit. I ate two slices of bread yesterday and several real chocolate chip cookies. Today I again had bread and cookies. Last night I had an extremely foggy feeling and had a hard time staying awake but when I woke up this morning I felt really good--so I ate more gluten today. My typical symptoms have been consistent with those of Fibro except most Fibro patients feel at their worst in the morning and I have always felt good in the am and progressively worse as the day goes by. I was expecting to feel like I'd been hit by a truck by that really hasn't happened yet. Is two days too soon for some--should I continue to eat gluten for a few more days before I make any snap judgements?

I've never had GI issues caused by gluten (although I do from dairy). I'm wondering what symptoms others who are Gluten Intolerant and not full blown Celiac have experienced?

I've had the following:

brain fog

joint/muscle pain

extreme fatigue

depression

lack of motivation

burning sensation in legs and arms

extremely cold hands and feet

feeling like the inner core of my body is shivering and unable to get warm

Restless Legs

extremities falling asleep often

headaches


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Bobbijo6681 Apprentice

Hi,

I was dx'd with Fibro a few years ago. Decided to try a gluten-free diet to see if I felt better. I noticed immediate improvements with the brain fog and exhaustion. The muscle pain took longer. I had the blood work done prior to going gluten-free and it was all negative. I believe I've been glutened a couple of times because the above symptoms returned.

I decided it was time to test the gluten-free diet and see if it was really the culprit. I ate two slices of bread yesterday and several real chocolate chip cookies. Today I again had bread and cookies. Last night I had an extremely foggy feeling and had a hard time staying awake but when I woke up this morning I felt really good--so I ate more gluten today. My typical symptoms have been consistent with those of Fibro except most Fibro patients feel at their worst in the morning and I have always felt good in the am and progressively worse as the day goes by. I was expecting to feel like I'd been hit by a truck by that really hasn't happened yet. Is two days too soon for some--should I continue to eat gluten for a few more days before I make any snap judgements?

I've never had GI issues caused by gluten (although I do from dairy). I'm wondering what symptoms others who are Gluten Intolerant and not full blown Celiac have experienced?

I've had the following:

brain fog

joint/muscle pain

extreme fatigue

depression

lack of motivation

burning sensation in legs and arms

extremely cold hands and feet

feeling like the inner core of my body is shivering and unable to get warm

Restless Legs

extremities falling asleep often

headaches

Most of those symptoms that you list are the ones that I had prior to diagnosis. I did have chronic D but otherwise felt fine in my tummy except for some occasional bloating. My brain fog has definately gotten better since going gluten free, and the fatigue has almost completely disappeared. I didn't really have depression, but totally lacked motivation sometimes, and now I can hardly sit still at times. The burning in my hands and feet they diagnosed as a B12 defiencey before diagnosis of Celiac, and now that my body is absorbing all of my food that has gotten better. Being extremely cold all the time has not completely subsided yet, but is getting better. I was having terrible problems sleeping due to Pain and Restless legs, and haven't needed to take meds to help me sleep in a few weeks now. My hands and feet would fall asleep frequently, but I haven't noticed that in a while either. I was subject to frequent migraines in my teens and early 20's but that went away prior to diagnosis.

I hope this helps you understand some of what you are going through, and lets you know that you are not alone in all of those symptoms, and it does get better!

Steve Moody Newbie

I've had the following:

brain fog

joint/muscle pain

extreme fatigue

depression

lack of motivation

burning sensation in legs and arms

extremely cold hands and feet

feeling like the inner core of my body is shivering and unable to get warm

Restless Legs

extremities falling asleep often

headaches

My Gluten Intolerance comes in the form of heartburn within 15-30 minutes of eating gluten and diarrhea 10-12 hours later. Except for the three weeks prior to biopsy, two times when I ate bread to "test" if this was my imagination, and and few slips, I've been gluten free for about six months.

Blood tests for Celiac were negative. Wheat allergy test was .001 positive (which is pretty much nothing).

I have the gene for celiac, which may be the cause of my intolerance. After informing my siblings that I had the gene so they might also have it, one sister told me that she and her husband have been on a gluten-free diet. Not because they have a problem with gluten (they don't) but because she thinks it's "healthier". When I told her avoiding gluten has no health benefits unless gluten bothers her, she replied that she knows that but uses gluten free flours and breads anyway because they are "healthier". Until then, I didn't know I had someone like that in my family. Oh well, at least weirdos like that are helping to bring down the price of gluten-free flours and breads.

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    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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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.
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