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Need Some Encouragement!

Tarantula44

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Tarantula44 Apprentice
Tarantula44
Posted

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
kathrynk
Posted

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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Tarantula44 Apprentice
Tarantula44
  • Author
Posted

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.

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kathrynk Rookie
kathrynk
Posted

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!

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Tarantula44 Apprentice
Tarantula44
  • Author
Posted

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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Celtic Queen Explorer
Celtic Queen
Posted

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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    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
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    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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