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xcraigx

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xcraigx Rookie

Hi, please help. I’ve been experiencing varying symptoms for the better part of the last year. At first it began with floating stools and it has increased with time to more frequent and loosely formed bowel movements. These days I go to the bathroom a few times a day and its anything but healthy. I’ve also experienced a significant drop in energy as well as a great deal of muscle fatigue. It takes very little muscle exertion to leave me feeling sore for days and I experience muscle twitches almost constantly. My muscles really feel drained all the time. I went to a doctor who did and EKG and discounted the likelihood of any neuromuscular disorders. Two months ago I was diagnosed as having Hypothyroidism and I have been taking a daily dose of Synthroid ever since. I was pretty sure that this was the problem and it would be licked in no time but my symptoms have not dissipated as I had hoped. The more I read about celiac disease, the more I identify with the symptoms. I’ve made an appointment for Dec 22 to see my doctor about it and take the necessary next steps. Was just wondering if these symptoms seem familiar to Celiac since it seems there are some very knowledgeable people here. I know that a paragraph of description is no means for diagnosis but I came across the site and figured I’d learn as much as I can before I head to the doctor in three weeks. I don't have any food allergies that I'm aware of. Any comments or further discussion would be great! Thanks a million.


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jerseyangel Proficient

Hi and welcome! Your symptoms could point to Celiac--since you have an appt. coming up soon, I would suggest not cutting gluten intake at all--if you are tested, cutting out gluten could cause a false negative. Best of luck in finding out whats going on :)

nettiebeads Apprentice
Hi, please help. I’ve been experiencing varying symptoms for the better part of the last year. At first it began with floating stools and it has increased with time to more frequent and loosely formed bowel movements. These days I go to the bathroom a few times a day and its anything but healthy. I’ve also experienced a significant drop in energy as well as a great deal of muscle fatigue. It takes very little muscle exertion to leave me feeling sore for days and I experience muscle twitches almost constantly. My muscles really feel drained all the time. I went to a doctor who did and EKG and discounted the likelihood of any neuromuscular disorders. Two months ago I was diagnosed as having Hypothyroidism and I have been taking a daily dose of Synthroid ever since. I was pretty sure that this was the problem and it would be licked in no time but my symptoms have not dissipated as I had hoped. The more I read about celiac disease, the more I identify with the symptoms. I’ve made an appointment for Dec 22 to see my doctor about it and take the necessary next steps. Was just wondering if these symptoms seem familiar to Celiac since it seems there are some very knowledgeable people here. I know that a paragraph of description is no means for diagnosis but I came across the site and figured I’d learn as much as I can before I head to the doctor in three weeks. I don't have any food allergies that I'm aware of. Any comments or further discussion would be great! Thanks a million.

The first part of your post got me going "yep, celiac" then the rest sort of confirmed it for me. That's exactly what my D was for six weeks before I went to my dr. And the fatigue (swimming upstream in a molasses river in Jan?) is so very much a part of celiac. I'd love to tell you to go on the gluten free diet now, but since you're seeing the dr. in 3 weeks, you'll probably need to stay on gluten so he can run the full celiac panel and/or schedule a biopsy. And be sure to ask him/her just how much experience with celiac disease he/she has had. I've had a dr tell me I could probably go back to eating wheat. I knew she was dead wrong. And celiac disease or gluten intolerancd isn't an allergy. It's an autoimmune disorder - the body is attacking itself, as opposed to an allergy where the body is trying to protect itself by flushing out the invader.

Keep us posted and ask as much as you want. The people here are very knowledgable (we have to be). I've learned more in the three months since joining than I have in the past 9 years.

Annette

RiceGuy Collaborator

I agree that is sounds like gluten intolerance. The damage that results might be the reason for the Hypothyroidism as well. I know someone who I suspect is suffering from the same thing. Once your gut is damaged, the malnutrition and toxins can lead to many other problems. The various nutrient deficiencies are like not eating right to begin with, since the body just can't absorb nutrients properly. The thyroid depends on iodine and magnesium, just to name two. Of course the body needs to be treated as a whole, so it's not like just certain vitamins or minerals can be singled out as more or less important.

In any case, you're in a good place to get answers and learn things you might never know otherwise. I hope you get the help you need asap.

darkangel Rookie

I agree... could be celiac or gluten intolerance. You may also be intolerant or sensitive to other foods. Dairy's the next biggest offender. Some others are nuts, eggs, peanuts, sugar, corn... Hopefully, the tests will give you some answers. If not, time to do some elimination.

xcraigx Rookie

Thanks for all your input everyone! :D

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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. 
    • trents
      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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