Completely different symptoms all of a sudden?

[LifewithCorgis]

Hello,

I'm glad to have found this forum. Nobody else close to me that I can have a deep chat with on my own time has celiac so it's hard to find advice without paying a doctor bill.

My celiac journey started after major spine surgery when I felt like there was a massive block in my intestines and while in the hospital I didn't use the restroom for 3-4 days despite them constantly feeding me laxatives. I kept telling them I was in agonizing pain but they brushed it off as gas every single time. Eventually I stopped eating anything except graham crackers and orange juice. When I came home, I experienced 6 months of stomach issues while searching for a diagnosis with a gastro, and after they finally did a gluten antibody blood test it was so high it was almost off the charts and I was scheduled for an endoscopy and colonoscopy not long after to confirm the diagnosis. So, for whatever reason, it seems as though the major bodily shock from the surgery (it was very invasive) may have triggered latent celiac symptoms if I had silent celiac before. Or it just triggered it entirely and them hospital staff not lifting a finger to run any tests worsened the experience because all I was eating were graham crackers that were just getting stuck in my digestive tract. But I digress.

I was diagnosed in my 30's and it has been very hard to go from eating gluten my entire life to cutting it out entirely. I've done a very poor job of sticking to the celiac diet because the only symptoms I got before were stomach pain (felt like a giant boulder crushing the left side of my stomach/intestines) and constipation. Which I considered very minor as I had a stress eating problem and used food for comfort for a while. 

After years of living with brain fog I finally opted to go hardcore on my gluten free diet a few months ago. I also have hashimoto's thyroiditis which contributes to the brain fog as well, but I was sick of forgetting simple things like where I left my phone so I figured I'd do whatever it took to get rid of the issues I was having.

In the last month of so I've been stricken with seemingly random bouts of what I can only liken to having the flu. I've had the flu once and it was agony. No energy, chest tightness, and muscle/joint pain so bad I couldn't even get a solid night's sleep. The first time it happened I thought maybe I caught the flu or a certain other virus that's been in the news for the last 3 years. The second time it happened I was confused but thought maybe whatever I'd had wasn't gone yet. Now it's a couple weeks later and it's happened again. However, this time I can pinpoint that I accidentally ate gluten on Friday night. I ordered groceries from a local store and specifically chose a gluten free pizza and checked off the "no substitutes" option. It's my fault for not reading the box more closely before eating it, but after getting about a fourth of the way in I realized that the crust was way too be good to be gluten free and checked and sure enough, normal pizza. I was annoyed but figured meh, big deal, just some stomach pain and constipation. I took some NSAIDs and CBD to head the inflammation off at the pass but surprisingly I didn't get either of those symptoms. I assumed the NSAIDs and stuff had just done there job.

I woke up this morning (Sunday) feeling like I had been hit by a bus. Joint and muscle pain throughout my body, chest tightness, fatigue, and eventually nausea after I tried to eat some safe foods. Carrot sticks, cereal, and chips + salsa. I'm thinking the salsa was a bad idea because of the tomato in it.

It's taken me this long to put two and two together because if this is being caused by my celiac, my symptoms have completely changed. Not only that but they're delayed by 1-2 days now as well. Is this something others have experienced as well? I ask because the only other real option would be something like rheumatoid arthritis and I do not want to go through the ordeal of getting diagnosed with another autoimmune condition since it takes months of trying to fit doc appointments into my work schedule, plus the serious burden of cost. I do already have 2 autoimmune conditions so getting a third wouldn't surprise me. It just would confuse me because surely there would have been smaller signs or symptoms first? This just feels like I got run over by a train every couple of weeks for some reason. With the celiac and hashimoto's there were a ton of smaller symptoms before the bigger ones started appearing in earnest.

I guess I'm just looking for a little reassurance here. I'm obviously going to stick to my gluten-free diet from this point on. I genuinely feel like I've been poisoned or something. Like there's snake venom in my veins making every joint and muscle throb with pain every few seconds. I may just spend a month cooking things for myself so I'm 100% sure they're gluten-free and see if this kind of thing happens again. 

Please, I'd love to hear anecdotes or information that can help assuage my fears here. To go from such mild symptoms about 6-8 hours after eating gluten to such heavy symptoms that strike me down a day or two later seems wild to me, but immune systems are fickle things.

[trents]

Welcome to the forum, LifewithCorgi!

Some questions:

Are you on hormone replacement therapy for the Hashimotos?

Are you on any vitamin and mineral supplements?

I would also recommend you stay away from processed foods. There are just too many ways gluten can be hidden but not show up on ingredient labels. I would suggest sticking with fresh, simple foods like fresh meat, fresh fruit and veggies.

You might also consider talking to your doctor about getting on a course of prednisone or something similar that will tone down your immune system for a while. Sounds like it is in overdrive.

[LifewithCorgis]

THank you for responding.

I am indeed taking (generic) synthroid for my hashimoto's. I have some fairly big but benign nodules on my thyroid so I'm just waiting for the day when I get a bad biopsy and the whole thing needs to be taken out.

I take a multi-vitamin daily and sometimes some vitamin D and an iron supplement if I'm feeling really run down. The iron supplement also has vitamin D and is dissolvable form so I don't have to take a pill. 

The only other things I take daily are a hormonal birth control pill and I've been on that for the last 15 years or so. Welbutrin. And xyzal for my year-round allergies. 

I've definitely started buying less processed stuff since switching to the gluten-free diet. I bought the pizza as a treat to myself to kind of have a fun weekend playing a game that released. Turns out that was a terrible idea and I'm not having as much fun as I thought, lol.

[trents]

It would probably be a good idea to check to make sure all your meds and supplements are gluten free. Wheat starch is sometimes used as a filler in pills. This might be helpful:

Ones not in that list you may have to contact the manufacturer. Pharmacists can help with getting contact information.

As you probably know, because celiac disease damages the villi of the small bowel lining, it typically results in vitamin and mineral deficiencies. Your multivitamin and iron supplement with D3 is good but you may need more. I would suggest 5000IU daily and a B-complex daily in addition to what you are now taking. Since B vitamins are water soluable there is no danger in overdosing on them. Costco's Nature Made line is a good bet for gluten free supplements.

[Scott Adams]

It is pretty common for some with celiac disease to have a delay in the onset of symptoms after eating gluten, and symptoms can change over time. It's probably too late at this point, but this article might help should you get contamination again:

 

[LifewithCorgis]

Thank you. I'll check on my vitamins. I do at least know the CBD gummies I take are gluten-free.

I feel much better today after feeling like such a wreck yesterday, still a little shaky but nowhere near as bad.

[Wheatwacked]

 I take 10,000 iu a day (250 mcg) to get the antidepressant effect of vitamin D. By the fourth day it worked wonders. That was in 2015.  Even today, if I stop or reduce for any length of time, I get anxious about answering the phone and my countertops get cluttered. Previous prescription of Xanax made me twitch and spasm until the dose wore off.  Four years later, in 2019 my blood plasma was only still 47 ng/ml and is now holding at 80 ng/ml. Safe zone is 30 to 120 ng/ml. Also, at 80 ng/ml I no longer seem to be affected if I get gluttoned. My doctor sees no reason for me to stop.

Low or deficient vitamin D is comorbid with most autoimmune diseases. Celiac Disease is a disease of malabsorption, so it is likely you have low levels of multiple essential vitamins and minerals and that could affect how quickly you heal. The Standard American Diet inherently has low intake status of several and recreating it as gluten free the risk increases because you lose the government required supplementations in packaged foods.

I started Predinsone in 2012 because it was the only thing that worked. and it worked like a miracle. Without it I could not stay out of bed for more than 10 minutes. I took 30 mg a day. Once I started the gluten free diet in 2014, I was able to reduce the daily dose. Today I am pain free but need 5 mg a day due to secondary adrenal insufficiency, a side effect of long-term prednisone. Between a nutrient rich diet and supplements I feel better than I did 40 years ago.

Quote

Vitamin D can modulate the innate and adaptive immune responses. Deficiency in vitamin D is associated with increased autoimmunity as well as an increased susceptibility to infection. As immune cells in autoimmune diseases are responsive to the ameliorative effects of vitamin D, the beneficial effects of supplementing vitamin D deficient individuals with autoimmune disease may extend beyond the effects on bone and calcium homeostasis.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/

Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective; Mayo Clinic Proceedings, https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

[trents]

That second link dealing with D toxicity is a great read. Thanks, Wheatwacked!

[LifewithCorgis]

Awesome, thank you for the vitamin D info! I was previously taking it regularly during the height of the virus but had gotten lax about it, so I'll start taking it again.

If I were to ask a doc about the prednisone, should I ask my GP or my gastro? I haven't really seen my gastro since the celiac diagnosis since there hasn't been a reason to go. My GP I've been seeing for almost 20 years though so she's pretty good about listening to my concerns and she's aware of my health history.

[Wheatwacked]

Your GP.  For the most part prednisone is out of favor because there are newer (and more profitable) drugs available. Prednisone is used for everything from anti transplant rejection to asthma, to anti-cancer, arthritis, eye drops. My main concern was that with all these new drugs, for example the popular Methotrexate, a potential side effect is sudden death, something I've never seen mentioned with prednisone. Here's a scary read from the Physicians Desk Reference. Compare the benefits vs risks of methotrexate and prednisone. Secondary Adrenal Insufficiency vs. liver and kidney toxicity. I chose the former. Keep in mind that though I worked a while as a Licensed Male Orderly in 1972 and my wife was a respected RN, I am not a professional health care worker. Just someone who reads too much.

methotrexate - Drug Summary   https://www.pdr.net/drug-summary/Methotrexate-Tablets-methotrexate-1797

prednisone - Drug Summary   https://www.pdr.net/drug-summary/Prednisone-Tablets-prednisone-3516.6194

Quote

Compared with placebo, low-dose methotrexate (median dosage: 15 mg/week) was associated with 23% higher risk of gastrointestinal adverse effects, 42% higher risk of pulmonary adverse effects, 15% higher risk of infectious adverse effects and 22% higher risk of hematologic adverse effects, all significant increases.   https://www.the-rheumatologist.org/article/low-dose-methotrexate-can-cause-adverse-effects/

 

Quote

All treatments for rheumatoid arthritis, including non‐steroidal, anti‐inflammatory drugs and slow‐acting antirheumatic drugs, may cause important harms that may occasionally be life‐threatening. We therefore suggest that short‐term prednisolone in low doses, i.e. not exceeding 15 mg daily, may be used intermittently in patients with rheumatoid arthritis, particularly if they have flares in their disease which cannot be controlled by other means.    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7043293/

 

[trents]

Prednisone is still a very popular immunosuppressant med because it is effective for many different kinds of inflammatory problems and because it is dirt cheap. It has been used for a long time and is relatively safe for short term occasional use. It is a known and trusted commodity in the medical world. Sometimes if you can arrest an inflammatory process, break the chain of immune system overreactions, long term immunosuppressant therapy is not needed. Just maybe an occasional intervention.

[LifewithCorgis]

I look at it as the same way I look at my kolonopin prescription. Something to take as needed, not necessarily to make as part of my daily med routine. 

I'm also debating trying to get FMLA for this as well. This has been the second instance I've taken off work for this issue and I have been written up before for taking too many sick days in too short a period, even with the sick time accrued. I don't plan on poisoning myself with gluten in the future but I'm sure accidents will happen so I figure better safe than sorry to have a safety net if it does happen.

[AlwaysLearning]

Before going gluten free, I would describe myself as either being asymptomatic or suffering. In hindsight, I realize that, for me, it was job dependent.

If I had a job where there were few options for eating out, I would bring my own breakfast/lunch which were generally gluten light. During these periods, I had no noticeable physical symptoms but if I did have a high-gluten day, might get a little "moody" (irritable). I call these periods asymptomatic because I was still suffering the ill effects of gluten (malnourishment and thyroid problems), but wasn't in any noticeable pain. 

If I had a job where there were lots of options for eating out, I would often buy my breakfast and lunch and sometimes dinner which were much more likely to be full of gluten than when I cooked for myself, and would end up with pain. Mostly it was just a general abdominal discomfort, but sometimes it would affect cartilage/ligaments/tendons as well. During these periods, I would also experience fast weight loss.

When I first went gluten free, I went through withdrawal (because gluten is physically addictive). I had about a week where I felt really lousy, did a ton of sleeping, and though I wouldn't equate it to having the flu, it did cut into my productivity pretty majorly. It was bad enough that I would not want to repeat it on a regular basis, so another reason to stick to a gluten-free diet.

After going gluten free, when I had slip ups (which happened pretty frequently in the first couple months as I learned about hidden sources of gluten), my reactions to gluten were MUCH worse than before going gluten free. My standard reaction to even miniscule amounts of gluten were really bad. It would start almost immediately with extreme irritability which would last about a day. The migraine headache would start a few hours after eating and would last between 24 and 72 hours. The brain fog and fatigue would set in on day two and could last as much as three days. And that was just from minute cross contamination or trace amounts. The one time I accidentally ate a full on gluten meal it took about three weeks to recover and after the mood/headache/fog/fatigue issues that lasted about a week, I had all over aches and pains. It is the only time in my life that I thought I might be suffering from arthritis.

That was all in the first couple years. After about eight years of being gluten free, I repeatedly made a mistake of buying a brand of bread that was not gluten free (thanks to the grocery store stocking it in the gluten-free section. grrrrrr) But I didn't have the big reactions that I used to have. Yes, I suspected that I had some gluten in my diet, but from my reactions, I thought it was only trace amounts. I didn't have the irritability, the brain fog, or the headaches. But I did lose a ton of weight. All told, it was probably about six loaves of bread over the course of a year ... during which I lost about thirty pounds without trying. Basically, the only notable symptoms I had were of malnourishment. Thankfully, my subconscious stepped in and told my brain that that bread didn't taste good and that I didn't like it long before I even realized that it wasn't gluten free. 

I read a post here that seemed to explain why my reactions were so much stronger right after going gluten free than eight years later, despite the dosage being so much bigger during breadgate. It has something to do with how many antibodies are already circulating in your system, waiting to attack gluten. And how many factories your body has already built to make more of those antibodies. Apparently, after eight years of being hard core gluten free, those antibodies and factories were practically non-existent, therefore, I didn't have noticeable reactions compared to before.

So yeah, if you are taking lots of risks in your gluten free diet, your antibody levels and the factory levels are going to remain high, and it could take up to two years of being gluten free for them to "die off". And yes, you can expect reactions to be more noticeable after going gluten free even if the amount of gluten you are consuming is minute.

Don't take risks! Even if you don't have noticeable symptoms, it doesn't mean that damage isn't being done. 

But I have every confidence that you'll figure things out and in the future, will do much better at sticking to your gluten-free diet. You can do it!