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Post gluten-free Symptoms...


Moongirl

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Moongirl Community Regular

Hi everyone.

I was just dx in dec, and have been gluten-free for about 3 weeks.

I am wondering if all my little symptoms are 'normal' withdrawls. Overall I feel 75% then when I did when i was was dx. however there are a few new sypmtoms that have popped up. i woke up one morning and my neck was sore all the way up to my jawline. On the right side there was a little lump, like my lymph gland is swollen. But i can never remember ever feeling it so present even when i have been sick. And its been like this for almost 2 weeks! went to the dr last week and he said it doesnt feel like abnormal swelling, but it is very annoying cause i can feel it when i swollow. Also just yesterday, all of a sudden i felt shakey and felt as if my heart was beating so fast. It only lasted about an hour.

Im just wondering if all this is somehow related to going gluten-free.

Thanks =)


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Nadtorious Rookie

My lymph nodes get WAAAAAAAAY swollen when I eat something wrong. I don't know why it would happen after you've gone gluten-free, but maybe it's more noticeable now that you didn't have it for a couple weeks.

Nadia

Canadian Karen Community Regular

Maybe going gluten free has thrown your thyroid out of whack. I can remember when I first went gluten-free, it threw my thyroid for a loop. My doctor had to adjust my thyroid meds about three times before we got things right...... I would maybe get your thyroid checked to make sure that's okay.....

Karen

key Contributor

THe heart thing could be related to consuming gluten and not knowing it. THis has happened to me when I get gluten. Don't know about the swollen lymph node. Give your body time to adjust. It has only been three weeks, but glad you are feeling better. I too felt better right away.

Monica

loraleena Contributor
Hi everyone.

I was just dx in dec, and have been gluten-free for about 3 weeks.

I am wondering if all my little symptoms are 'normal' withdrawls. Overall I feel 75% then when I did when i was was dx. however there are a few new sypmtoms that have popped up. i woke up one morning and my neck was sore all the way up to my jawline. On the right side there was a little lump, like my lymph gland is swollen. But i can never remember ever feeling it so present even when i have been sick. And its been like this for almost 2 weeks! went to the dr last week and he said it doesnt feel like abnormal swelling, but it is very annoying cause i can feel it when i swollow. Also just yesterday, all of a sudden i felt shakey and felt as if my heart was beating so fast. It only lasted about an hour.

Im just wondering if all this is somehow related to going gluten-free.

Thanks =)

I have had a swollen lymph in my neck since I got sick last March. Even though gluten free comes and goes. Make sure you are not getting hidden gluten like in your shampoo, soaps, makeup etc. Also watch out for cross-contamination. Make sure you have your own toaster and pots and pans and utensils.

Mieux7 Newbie

Not to suggest you ignore other possible reasons for swollen glands, but when I went gluten-free (several months ago), I felt awful for the first few weeks - shaky, foggy, achy (almost like having the flu), etc. I think it's the effects of detoxing and maybe withdrawal. I find that everytime I reach a new level of gluten-free (like when I've uncovered a hidden source & eliminated the product) I go through that detoxing again, though not as severe as at first. Also, now that I'm gluten-free, I'm MUCH more sensitive to small amounts and CC. Hang in there!

JessicaB Explorer
Not to suggest you ignore other possible reasons for swollen glands, but when I went gluten-free (several months ago), I felt awful for the first few weeks - shaky, foggy, achy (almost like having the flu), etc. I think it's the effects of detoxing and maybe withdrawal. I find that everytime I reach a new level of gluten-free (like when I've uncovered a hidden source & eliminated the product) I go through that detoxing again, though not as severe as at first. Also, now that I'm gluten-free, I'm MUCH more sensitive to small amounts and CC. Hang in there!

i have been gluten-free for two weeks. I overall feel better but am depressed, and for the past 3 days have had excessive "D" I never have it. So im wondering if its just my adjustment to eating. Even my symptoms did not include diarrea?? Anyone else have this symptom after going gluten-free???


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Caeli Rookie

I have only been diagnosed for four weeks. Since that time I have tried (over Christmas mind you) to go on a gluten-free diet, bnut feel I have been fairly faithful!

One of the things I have noticed in this time has been a sense of having what I escribe as "irritable" feet, legs, hands and arms. It is a s if I have a tingling sensation, an urge to move them, to wring them out, as if I want to get rid of excess energy. Has anybody else had these types of sensations?

I have suffered depression and anxiety as well as panic attacks over the years. Since the gluten-free diet I have had one or two episodes but I am hoping this will improve as I physically improve. I suspect a contributor to my depression since the diagnosis has been my coming to grips with the fact I am nowe a coeliac and have to maintain the diet.

I will also be interested to see if my depression and anxiety improves as I feel for year there has been this viscious circel of having physical symptoms (due to undiagosed celiac disease) and not being able to trace it to anthing physical thinking the cause to be my thinking or attitide to things. At least now I know the physical symptoms were not made up by me but had a real physical cause!

Guest cassidy
I have only been diagnosed for four weeks. Since that time I have tried (over Christmas mind you) to go on a gluten-free diet, bnut feel I have been fairly faithful!

One of the things I have noticed in this time has been a sense of having what I escribe as "irritable" feet, legs, hands and arms. It is a s if I have a tingling sensation, an urge to move them, to wring them out, as if I want to get rid of excess energy. Has anybody else had these types of sensations?

I have suffered depression and anxiety as well as panic attacks over the years. Since the gluten-free diet I have had one or two episodes but I am hoping this will improve as I physically improve. I suspect a contributor to my depression since the diagnosis has been my coming to grips with the fact I am nowe a coeliac and have to maintain the diet.

I will also be interested to see if my depression and anxiety improves as I feel for year there has been this viscious circel of having physical symptoms (due to undiagosed celiac disease) and not being able to trace it to anthing physical thinking the cause to be my thinking or attitide to things. At least now I know the physical symptoms were not made up by me but had a real physical cause!

The feelings you are having in your legs and arms sounds like restless legs syndrome. They do have medication for that. My husband has it and he has been taking magnesium and that has really helped him. I don't know how that is related to Celiac.

Caeli Rookie
The feelings you are having in your legs and arms sounds like restless legs syndrome. They do have medication for that. My husband has it and he has been taking magnesium and that has really helped him. I don't know how that is related to Celiac.

Thanks - perhaps I am not absorbing sufficient magnesium because of the malabsorption caused by coeliac disease. As I improve it will be interesting to observe if the "restless ;eg syndrome" subsides. Thanks for your response. It is great to hear and learn from the experience of fellow sufferers and/or sympathisers/understanders.

julie5914 Contributor

I had the same lump in nexk thing I got my thyroid checked countless times -- it was always fine. The doctors didn't seem to think much of it. It seems to coincide with muscle tightness in my neck and shoulders. My neck gets soooo tight. It has gotten better recently with yoga, a massage or two and a new temperpedic pillow. It is likely a deficiency for me too, or a small connective tissue problem as a result of still having high gluten numbers (even though I am free of it). Try a trigger point massage and yoga to see if it helps. And don't forget your vitamins!

LLCoolJD Newbie

Going gluten-free definitely changed my symptoms. Before going on the diet, I had one problem: gas. Tons of it. It's clear why I went on the diet. Now that aspect of my health is much, much better, but new problems arise upon gluten contamination, such as general malaise, poor bowel movements, difficulty concentrating, etc. Overall, the diet is definitely worthwhile, though.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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