Reactions Getting Worse: Two Years Post Diagnosis

[AliciaKaur]

After experiencing severe symptoms for six years, I finally was diagnosed with celiac disease two years ago. I went gluten-free and immediately started feeling better. There was a learning curve (including getting rid of wheat-contaminated spices like turmeric). 
 

Recently, I had been really healthy, exercising regularly, getting in shape, eating well and feeling amazing. Suddenly I was glutened three days in a row. Then a week later I was glutened again. I believe it was all cross contamination. Normally I feel miserable, body aches, severe migraine for a couple days. This time I had mild cold symptoms, my lymph node was painfully swollen (very hard and poking out of my neck with a lot of tension), chills, extreme migraine 24/7, higher pulse, easily exerted/heart beating out of my chest, fatigue. It was all similar but much more severe (but still not as severe as accidentally eating some soy sauce which leaves me attached to the toilet for 14 days and in pure hell). 
 

I feel like the healthier I am, the stricter I need to be. It’s so hard in a world full of gluten. I am posting to vent and also give an updated experience. I had gone so long without any symptoms. I hate my life and hate the existence of gluten when this happens. I am so miserable. I also become very cranky and negative. 
 

Another weird thing I noticed is I will start to feel better and suddenly get sick again. I wonder if it has to do with the lymph node. I was feeling better yesterday but the lymph node was still hard as ever. Today it went down and my miserable migraine returned. I wonder if the lymph node released something that would continue my symptoms. I can barely feel the lymph node now but I feel so miserable. 
 

Anyway, just say no to cross contamination. 🙏🏼 

[trents]

Don't assume every ill you experience is gluten-related. Especially in the COVID era. I have not heard of gluten caused lymph node swelling. That sounds more like some infection response to me.

[AliciaKaur]

10 minutes ago, trents said:

Don't assume every ill you experience is gluten-related. Especially in the COVID era. I have not heard of gluten caused lymph node swelling. That sounds more like some infection response to me.

There is a post in this forum about lymph node swelling and celiac disease. There are also several studies concerning this:

https://pubs.rsna.org/doi/10.1148/rg.314105215

 

Last month I had a horrible cold and my celiac symptoms are very distinct. I see too commonly people saying not to assume it is gluten. I wish more respect was paid to the OP. I ate something I did not vet. I researched the item to find they claim to « misprint » gluten free on an item that was not gluten free. I had a reaction. Please do not assume I am assuming. I know the difference between the flu, COVID, and a common cold. I have actually had COVID, breakthrough infection of delta, and a miserable cold and never blamed any of it on gluten. 

 

[DontEatFrenchFries]

No experience with lymph nodes so definitely taking the other posts into account, but adding that celiac reactions can definitely get worse the longer you're gluten-free. You get more sensitive to it over time and smaller amounts of gluten can lead to pretty serious reactions. It sucks. For me, I've been celiac ~15 years and when I was younger and cheating a lot, sometimes I barely noticed any reaction, but my body was full of gluten anti-bodies. Now, I never cheat and am basically gluten-sterile, so any little trace amount of gluten will give me a rash. Never used to get rashes when I was young.

I do think I was also sort of used to being a little bit sick all the time and now that I am pretty much 100% all the time, any little sickness is much more noticeable. Just makes me that much more aware of what and where I eat.

[AliciaKaur]

3 minutes ago, DontEatFrenchFries said:

No experience with lymph nodes so definitely taking the other posts into account, but adding that celiac reactions can definitely get worse the longer you're gluten-free. You get more sensitive to it over time and smaller amounts of gluten can lead to pretty serious reactions. It sucks. For me, I've been celiac ~15 years and when I was younger and cheating a lot, sometimes I barely noticed any reaction, but my body was full of gluten anti-bodies. Now, I never cheat and am basically gluten-sterile, so any little trace amount of gluten will give me a rash. Never used to get rashes when I was young.

I do think I was also sort of used to being a little bit sick all the time and now that I am pretty much 100% all the time, any little sickness is much more noticeable. Just makes me that much more aware of what and where I eat.

It took me so long to be diagnosed I never had a cheating period, but I do know I used to eat plenty of gluten and I baked constantly. I carry a genetic variant for the disease. My sister’s best friend was diagnosed in high school and would cheat but also has had to relieve herself in a parking lot due to explosive diarrhea. Not my idea of a fun time.
 

My symptoms are such torture that although I love other people with celiac disease, it can be really frustrating when they are so lax about gluten. I admit I would probably be that way too if I didn’t get so ill.
 

I too was just constantly ill before and even thought it was part of being older. 🤦🏻‍♀️ I am in my 30s and finally feel healthy enough to do what I was doing in my early 20s. Two years of being gluten free (besides accidental consumption) and supplementation after being severely vitamin deficient has made such a difference. It makes me very hopeful and happy, but I wish gluten wasn’t such a potent poison. 

[DontEatFrenchFries]

3 minutes ago, AliciaKaur said:

It took me so long to be diagnosed I never had a cheating period, but I do know I used to eat plenty of gluten and I baked constantly. I carry a genetic variant for the disease. My sister’s best friend was diagnosed in high school and would cheat but also has had to relieve herself in a parking lot due to explosive diarrhea. Not my idea of a fun time.
 

My symptoms are such torture that although I love other people with celiac disease, it can be really frustrating when they are so lax about gluten. I admit I would probably be that way too if I didn’t get so ill.
 

I too was just constantly ill before and even thought it was part of being older. 🤦🏻‍♀️ I am in my 30s and finally feel healthy enough to do what I was doing in my early 20s. Two years of being gluten free (besides accidental consumption) and supplementation after being severely vitamin deficient has made such a difference. It makes me very hopeful and happy, but I wish gluten wasn’t such a potent poison. 

I feel your frustration with cheating celiacs. There's definitely a denial/peer pressure factor to it but I deeply regret my cheating phase because I think it made it worse long-term. I'm not even the least bit tempted anymore because of how bad the reactions have gotten, but I hate when people say "My friend has celiac and she's okay with a little gluten." Like okay cool? I also hate being compared to people who are gluten/lactose intolerant because maybe they can handle a little bit but our reaction is autoimmune so it really is ANY little amount triggers it. So much happier not taking any risks!

[AliciaKaur]

3 minutes ago, DontEatFrenchFries said:

I feel your frustration with cheating celiacs. There's definitely a denial/peer pressure factor to it but I deeply regret my cheating phase because I think it made it worse long-term. I'm not even the least bit tempted anymore because of how bad the reactions have gotten, but I hate when people say "My friend has celiac and she's okay with a little gluten." Like okay cool? I also hate being compared to people who are gluten/lactose intolerant because maybe they can handle a little bit but our reaction is autoimmune so it really is ANY little amount triggers it. So much happier not taking any risks!

Absolutely and it makes it much harder to eat out. I have surprisingly eaten out here and there safely, but I recently took recommendations from younger celiacs (who I later found out cheat) and I got sick. We just moved to a new area and my old local celiac group was amazing. There’s also gluten sensitive people who still eat some gluten as well, and it causes the same problem. I hate being too closed off, but I just can’t eat with imprudence at this point. I’m glad you are looking out for your health. The studies I have read are pretty chilling from reduced lifespan to chronic symptoms (despite going gluten-free) to GI cancers. Annoyingly I have read celiacs are susceptible to other illnesses on top of all this but I avoid thinking about that. A gluten-free lifestyle is the closest bet to living a long healthy good quality life. Missing the social factor, I would like to organize celiac-safe events eventually. It could be a good thing and hopefully a positive influence on those who cheat (to their detriment). 

[Ashlee H]

Mast cell activation syndrome occurs in some people with celiac disease. If I eat red meat, I have swollen lymph nodes in my neck. Many people with MCAS are not able to eat canned food. I am still able to eat canned food, but many prepared foods are not gluten free enough for me, which is frustrating. 

[trents]

On 11/4/2021 at 10:22 AM, AliciaKaur said:

I wish more respect was paid to the OP. I ate something I did not vet. I researched the item to find they claim to « misprint » gluten free on an item that was not gluten free. I had a reaction. Please do not assume I am assuming. I know the difference between the flu, COVID, and a common cold. I have actually had COVID, breakthrough infection of delta, and a miserable cold and never blamed any of it on gluten. 

No disrespect intended. Just trying to help. Sometimes we as celiacs can get a little tunnel vision.

Edited November 6, 2021 by trents

[Scott Adams]

This article might be helpful, as many celiacs do continue to have issues, even after going gluten-free:

 

[ButWhatCanIEat]

I was doing really well and have been getting very sick lately. I feel like it's a guessing game every time I do. Was I accidentally glutened? Is my gall bladder going? Is it COVID? Is it a garden variety stomach flu? (For reference my wife's stomach has been upset a lot lately too). I had my bloodwork done recently and my tga was within normal limits so I think I must be avoiding gluten pretty well.

[Wheatwacked]

An unfortunate side effect of the Gluten free diet is that we avoid certain foods. This can lead to vitamin and mineral deficiencies that were not a problem before the Celicac Disease diagnosis.  To me it explains why at first you feel better on GFD, you've removed the toxin, but eventually you use up the stored reserves of a different set of vitamins and minerals Low vitamin D, folate, choline, potassium, calcium for starters are problematic in the general population, so maybe you are getting the metabolic diseases that the non celiacs have that have nothing to do with gluten, but seem similar. Check your current diet for what you are not eating. At the top of my list, from a totally unofficial and limited survey it appears to me that people with higher plasma vitamin D levels around 70 ng/ml are affected less by cross contamination. Vitamin D seems to mitigate the "autoimmune response".

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Possible Role of Vitamin D in Celiac Disease Onset   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231074/

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Risks Of Nutrient Deficiencies In A Gluten-Free Diet    https://www.integrativepro.com/articles/risks-of-nutrient-deficiencies-in-a-gluten-free-diet