Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Worse Attack After Starting Diet And Being Exposed?


amiglute

Recommended Posts

amiglute Newbie

First of all i do not know for sure im gluten intolerant or have celiac disease. I had a pain in my upper right rib area that felt like a tennis ball sitting in there. It was more like a constant pressure and wasn't a sever pain. I went to the Dr. and he suggested a gluten free diet and did some blood work that didn't show any other real issues.

I never really had any diarreah or really any other symptoms that i knew of until this right rib cage pressure/pain came along.

So i decideed to go gluten free and i did this for about two weeks. Whether it was mind games or not i found that even after one day i didn't really feel that pressure in my right rib so that makes me think he was on to something.

(let me add i am lactose intolerant if that ever factors into any of this)

But what i find weird is this. I went all this time and never really had any symptoms until this right rib cage pressure and started the gluten free diet. One day coming home from work i was so hungry i stopped at McDonalds and had two hamburgers and fries.Well i started feeling bad and but the symtpoms im getting NOW are not what i had ever had before.

I guess my question is this. Had i not gone gluten i am thinking the two hamburgers wouldnt have had as big a deal on my body. Dopes going gluten free even for a short time and THEN getting glutoned make symptoms worse? I have weakness in my hands when i type, i get some twithcing in mt lower calves, had some bad headaches that i think are like sinus headaches(i do have season allergies so maybe that's it),. Can it be worse trying to go free from gluten and then getting attacked? That doesn't make a lot of sense or maybe it makes a lot of sense i don't know.

I just find it real weird all the sudden i have weak muscles,twitching, maybe even a burning blood sensation, my right pinkie all the way down can go numbish and tingle as well. No diarreah, no real stomach pain, didn't even get that right rib cage pressure back i got something that felt like my body was being poisoned or attacked(of course it was).

So here i sit not knowing whether or not for sure i am anything yet this stuff is happening fast. I go from nothing at all(maybe some slight fatigue and that rib cage pain) to all the sudden i think i have serious nerve problems. My hope is that i am allergic to gluten and i can stay away from it and let my body heal properly. I just found it real weird to go from nothing to muscle fatige that fast and thinking had i NEVER started the gluten diet that may have not happened. maybe it would have but i kind of have afeeling it wuldnt of.

Hard to explain all this sorry for being all over the place.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular

I can tell you that a lot of people report this effect- they try the diet, and then the

first time they have gluten, the symptoms are far worse than ever before. It's

certainly not universal, but is quite common. It's really very good proof that gluten

is no good for you, if it makes you sick this way.

Link to comment
Share on other sites
srall Contributor

Oh absolutely! You can research this board and find many stories of people glutened for the first time after being gluten free for even just a few weeks. I had one bowl of soup (not even a piece of bread) and was bed ridden with joint pain, fatigue and a nasty DH rash for 3 weeks. It's very possible.

Link to comment
Share on other sites
nvsmom Community Regular

I have only been gluten-free for 4 months, and I was only accidentally glutened in that first month. I didn't find my reaction to be much worse than it had been in the past when I wasnot gluten-free, but it was definitely much more noticeable than it had been. I attribute that to the fact that the inflammation and symptoms were starting from a low level... let's rate it as a 2 on a scale of 1-10 for symptoms. When I was glutened, I had a reaction of a 7; going from a 2 to a 7 was very noticeable. When I was eating gluten all the time my body was in a constant state of inflammation which I would rate at a 5; so when I ate gluten and got a reaction of a 7 it wasn't such a change in symptoms to go from a 5 to a 7....

Does that make sense? LOL

Perhaps when I've been gluten-free longer I'll notice more severity in my reaction to gluten, but for now I would have to say my reactions are not worse than when I was undiagnosed.... But that's just me. :)

Link to comment
Share on other sites
GFinDC Veteran

Yep, that does happen. Bunnie is right, if your body reacts badly to gluten you shouldn't eat it. Most people with celiac don't know they have it. Symptoms are often in places besides the gut. Symptoms in other parts of the body are sometimes misdiagnosed as some other condition. Some people are "silent celiacs" and have no obvious symptoms aslo.

Link to comment
Share on other sites
SMDBill Apprentice

I had 4 days of pretty rough intestinal pain and cramping after 5 weeks gluten-free and then getting glutened. The following 4-7 days were lighter symptoms followed by the last day of a 2 week recovery where I actually felt good again, as if it hadn't happened. And I didn't have a cheeseburger or anything. Mine was just cross contamination.
Link to comment
Share on other sites
Takala Enthusiast

This reaction to eating gluten, after being off of it awhile, does not happen to normal people who are eating a glutenfree diet for awhile for other reasons, such as living in a gluten free home with family members.

So it is unique to the celiac and gluten intolerant. If you had not started the gluten free diet, you would have still developed those neurological symptom reactions, but the onset may have been gradual enough that you didn't feel it all at once - we should call it the boiled frog syndrome, where the frog gets put in a pot of tap water on the stove.... and doesn't notice that the water got really hot, until it is too late.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gatita Enthusiast

amiglute, going gluten-free for sure made symptoms of glutening suddenly worse for me. It blows my mind that six months ago I was eating pasta and garlic bread and feeling noooo pain... but this week I did a mini-gluten challenge and had a super severe reaction!!

Who knows why our bodies just realize they don't want this stuff after we go gluten-free... and if any gluten sneaks back in, the body knows how to tell us loud and clear, "Oh hail no!"

OK that's my very scientific explanation of it lol...

Link to comment
Share on other sites
Persei V. Enthusiast

I had cramps and a D attack this Monday morning... And the different thing I ate was a bloody "gluten-free" mini pizza crust. Yeah, right...

Link to comment
Share on other sites
love2travel Mentor

After my celiac diagnosis 1.5 years ago, I went gluten free. I was accidentally glutened once soon after and not again until a few weeks ago. Both times I had absolutely no reaction! Sometimes a little part of me wonders whether I truly do have celiac...but in my mind I know that I do. Weird. :blink:

Link to comment
Share on other sites
1desperateladysaved Proficient

"Does going gluten free even for a short time and THEN getting glutoned make symptoms worse?"

It did me! I think it is too sick on full time gluten to let you know. But when it has a chance to recover even a bit, it will let you know! It is actually a very good thing. It is super motivating!

Diana

Link to comment
Share on other sites
mbrookes Community Regular

I have been gluten free for six years, and YES, an accidental exposure to gluten brings a swift and extremely unpleasant reaction. And, 1desperateladysaved, it is a very strong motivator.

I have learned so much from you people on this site. I don't know how I would have ever gone from my original "I will never be able to eat anything" to "It's just routine" without y'all. Thanks a million times.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,070
    • Most Online (within 30 mins)
      7,748

    TT24
    Newest Member
    TT24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...