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Need Some Encouragement!
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Hi, I'm so thankful for this site and the amount I've learned from you all since joining! I have had some negative blood tests but positive for total SIgA and thyroid antibodies. No biopsy, but celiac runs in family and my dr thinks I may have it. I agreed to do the strict gluten and dairy free diet. I started one month ago today and have noticed some improvements so far... Way better digestion, sinus inflammation has gone down, chronic swollen glands have gone down. But I am still having tons of symptoms, especially migraines, bladder pain, fatigue. Over the past two weeks the headaches have been everyday, and the bladder pain has been really bad at times, also my fatigue and head fog are off the charts horrible. I'm wondering if even after a month on the diet if I can still be having detox symptoms. That's what it feels like it is, I just thought this part would be over sooner. My dr also has me on homeopathic detox drops for my liver and kidneys as I have a mild fatty liver (not from alcohol/drugs). I also have been doing green smoothies with fresh greens daily too, I suppose all this might be too much for my system to handle. Can anyone give any insight as to how long detox can last from going gluten/dairy free and what are some things you can do to relieve the awfulness of it? Also how long it takes to start feeling better from the fatigue and headaches etc? Thank you! T

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Hi, I'm so thankful for this site and the amount I've learned from you all since joining! I have had some negative blood tests but positive for total SIgA and thyroid antibodies. No biopsy, but celiac runs in family and my dr thinks I may have it. I agreed to do the strict gluten and dairy free diet. I started one month ago today and have noticed some improvements so far... Way better digestion, sinus inflammation has gone down, chronic swollen glands have gone down. But I am still having tons of symptoms, especially migraines, bladder pain, fatigue. Over the past two weeks the headaches have been everyday, and the bladder pain has been really bad at times, also my fatigue and head fog are off the charts horrible. I'm wondering if even after a month on the diet if I can still be having detox symptoms. That's what it feels like it is, I just thought this part would be over sooner. My dr also has me on homeopathic detox drops for my liver and kidneys as I have a mild fatty liver (not from alcohol/drugs). I also have been doing green smoothies with fresh greens daily too, I suppose all this might be too much for my system to handle. Can anyone give any insight as to how long detox can last from going gluten/dairy free and what are some things you can do to relieve the awfulness of it? Also how long it takes to start feeling better from the fatigue and headaches etc? Thank you! T

Hi there T, I am in the same boat (off gluten for 2 weeks now) Just finally heard today my bloodwork was negative. Because I have been off gluten, I am not going to pursue further testing. The severe gas pains, bloating, and cramping has stopped. I have lost a few pounds, and the swelling in my face has gone down. IIf I do not have celiacs, I have an obvious intolerance plus several other autoimmune diseases. However, I still get some headaches as well, and I am still fatigued. What detox drops do you take? My ND has me on UNDA numbers biotherapeutic drainage). I haven't noticed that they are helping much-but who knows when it is in conjunction with dietary changes. What are you putting in the smoothie? Have you considered cutting out dairy as well? I cut out both gluten and dairy. I had a little dairy yesterday and ended up with D all morning. I realized that both are affecting me!

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Hi there T, I am in the same boat (off gluten for 2 weeks now) Just finally heard today my bloodwork was negative. Because I have been off gluten, I am not going to pursue further testing. The severe gas pains, bloating, and cramping has stopped. I have lost a few pounds, and the swelling in my face has gone down. IIf I do not have celiacs, I have an obvious intolerance plus several other autoimmune diseases. However, I still get some headaches as well, and I am still fatigued. What detox drops do you take? My ND has me on UNDA numbers biotherapeutic drainage). I haven't noticed that they are helping much-but who knows when it is in conjunction with dietary changes. What are you putting in the smoothie? Have you considered cutting out dairy as well? I cut out both gluten and dairy. I had a little dairy yesterday and ended up with D all morning. I realized that both are affecting me!

Hi Kathryn,

From reading this forum and other articles it seems lots of folks have negative blood tests but can still be positive. The testing sounds kinda nutz and not so reliable, I think many have realized that they feel better off gluten and so they should stick to that. I am off dairy as well, I eliminated that along with the gluten. I am on the UNDA drops as well! 2, 20, 243. I started them 3 weeks ago, and am just starting to notice these detox symptoms. Today was one of the worst days I think I've ever had! The fatigue and muscle and bone pain are pretty horrific. I guess it's nice to know something is working if this is detox. I've been doing green smoothies every morning, they consist of leafy greens (spinach, kale or chard) and fruit and water: http://greenforlife.com/ I think I may be over doing it. I am going to take a break from the smoothies for now, until these symptoms reside a bit. Thanks for your reply, so glad you're feeling better and good luck with the rest. t.

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Hi Kathryn,

From reading this forum and other articles it seems lots of folks have negative blood tests but can still be positive. The testing sounds kinda nutz and not so reliable, I think many have realized that they feel better off gluten and so they should stick to that. I am off dairy as well, I eliminated that along with the gluten. I am on the UNDA drops as well! 2, 20, 243. I started them 3 weeks ago, and am just starting to notice these detox symptoms. Today was one of the worst days I think I've ever had! The fatigue and muscle and bone pain are pretty horrific. I guess it's nice to know something is working if this is detox. I've been doing green smoothies every morning, they consist of leafy greens (spinach, kale or chard) and fruit and water: http://greenforlife.com/ I think I may be over doing it. I am going to take a break from the smoothies for now, until these symptoms reside a bit. Thanks for your reply, so glad you're feeling better and good luck with the rest. t.

I am on UNDA numbers 1, 20, and 243... You mentioned thyroid antibodies...did you get a dx of hashimotos? The reason I'm asking is because cruciferous (SP?) veggies are not good for thyroid function (kale, broccoli, cauliflower) Also...I have read that the risk of getting a false negative is much higher for people with hashimotos...I will see if I can dig up where I read that. Probably on here...these people have been an amazing resource and wealth of knowledge!

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Oh wow! That is really interested about the false neg with Hashi's. My doc didn't diagnose me with Hashis I guess because my hormone levels were fine. I do have many symptoms though, intolerance to cold, hair is falling out, but she said lots of those symptoms can be interchangeable with adrenal issues which I do have primarily, she tested my cortisol levels and they are a little under where they should be. She also said many people have thyroid antibodies and she sort of brushed it off. That is another question of mine tho, should I be concerned about it? I've heard so many times, on this forum and in clinical studies that thyroid issues resolve on gluten-free diet. So I guess I'm just going to see if it all gets better before getting cconcerened about anything. If you find that study please post it. Seems like we're in a similar situation. I also have reynauds, I saw that in your sig. K

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Could you have an intolerance to any other kinds of foods. Lots of people on here have issues with corn, soy, nightshade vegetables, msg, etc. You might look into an elimination diet to see if you can find an underlying issue.

I was reading a book last night that said healing times can vary greatly from person to person. A lot of it can depend on your age and how much damage has been done to your intestine.

Also, could you be getting cross contaminated somehow? That gluten is very sneaky :P

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    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
    • Yeah I actually live in Japan which is pretty similar, because Coeliac disease is rare over here so is the understanding and accommodating it. When I mention Gluten to some restaurants they think I am talking in English and they are unfamiliar with the word in Japanese.    So it seems I can write off my chances of getting some authentic Chinese gluten-free food at the airport, but at least there is a Thai restaurant in T3 so I won't starve. Its called  'Phrik Thai' for future reference. http://en-shopping.bcia.com.cn/store/739.html  
    • While in Boston I found Cheer's  Bloody Mary mix that says gluten-free on the bottle and have had no issues and  tastes pretty good 
    • I always assumed plain coffee was, but I have seen some controversy online about this. I know someone who is gluten free and only buys whole beans and grinds them herself because she doesn't trust how the grounds are processed.
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