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Need Some Encouragement!


Tarantula44

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Tarantula44 Apprentice

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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kathrynk Rookie

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!

Tarantula44 Apprentice

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: Open Original Shared Link 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.

kathrynk Rookie

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: Open Original Shared Link 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!

Tarantula44 Apprentice

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

Celtic Queen Explorer

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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    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
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