Relapse

[Hannah Turner]

Hi...

Has anyone ever experienced a really bad coeliac relapse? I've been completely gluten free for a year since being diagnosed but i was fed incorrect bread at a team away day four weeks ago, i then accidently ate a big of spaghetti 5 days later. I have been so ill since, my belly is still so bloated, I feel so weak and i have been experiencing the dizziness again plus headaches, numb hands and a numb face. I have even been checked over in hospital. does anyone experience these symptoms???

[ravenwoodglass]

Your symptoms are not unusal nor is the duration for some of us. You have given your antibodies a good flare up. It is good that you went to the doctor to make sure that nothing else was going on. Be kind to your system as much as you can. Eat mostly whole foods for now and it is a good idea to cook your veggies and fruits well to make them easier to digest. You may want to drop dairy for bit if you consume as you may not be producing the enzyme to digest it until you have healed again. That may be contributing to your bloating. If you can rest do rest. You are not being lazy your body is healing and needs nutrition and time to heal again.

Sorry this happened to you and I hope you heal again quickly.

[Ennis-TX]

Yep stick to whole foods, DO NOT eat out, it is Russian roulette just bring your own food in meal prep boxes. The numbing could either be from deficiency issues with magnesium and B-vitamins OR it could be like me and have gluten ataxia. If it is gluten ataxia you really need to avoid it as your body might be attacking your nervous system and brain and can cause longterm damage. 

If your still having issues with bloat, got to a lower carb diet and avoid sugars, and starches. Simple stews, egg dishes, and sheet pan meals. 

[Hannah Turner]

17 minutes ago, Ennis_TX said:

Yep stick to whole foods, DO NOT eat out, it is Russian roulette just bring your own food in meal prep boxes. The numbing could either be from deficiency issues with magnesium and B-vitamins OR it could be like me and have gluten ataxia. If it is gluten ataxia you really need to avoid it as your body might be attacking your nervous system and brain and can cause longterm damage. 

If your still having issues with bloat, got to a lower carb diet and avoid sugars, and starches. Simple stews, egg dishes, and sheet pan meals. 

As it is 4 weeks nearly now I was getting concerned, and was wondering if people had experienced these symptoms for this duration. Maybe it is because I was completely gluten-free and ate so much in one go that it has made it ten times worse. I have been told about peppermint oil capsules, have you tried them before? I have had bloods for all deficiencies and everything has come back normal. It seems to affect my everything, my head, ears, etc.

18 minutes ago, Ennis_TX said:

Yep stick to whole foods, DO NOT eat out, it is Russian roulette just bring your own food in meal prep boxes. The numbing could either be from deficiency issues with magnesium and B-vitamins OR it could be like me and have gluten ataxia. If it is gluten ataxia you really need to avoid it as your body might be attacking your nervous system and brain and can cause longterm damage. 

If your still having issues with bloat, got to a lower carb diet and avoid sugars, and starches. Simple stews, egg dishes, and sheet pan meals. 

 

24 minutes ago, ravenwoodglass said:

Your symptoms are not unusal nor is the duration for some of us. You have given your antibodies a good flare up. It is good that you went to the doctor to make sure that nothing else was going on. Be kind to your system as much as you can. Eat mostly whole foods for now and it is a good idea to cook your veggies and fruits well to make them easier to digest. You may want to drop dairy for bit if you consume as you may not be producing the enzyme to digest it until you have healed again. That may be contributing to your bloating. If you can rest do rest. You are not being lazy your body is healing and needs nutrition and time to heal again.

Sorry this happened to you and I hope you heal again quickly.

As it is 4 weeks nearly now I was getting concerned, and was wondering if people had experienced these symptoms for this duration. Maybe it is because I was completely gluten-free and ate so much in one go that it has made it ten times worse. I have been told about peppermint oil capsules, have you tried them before? It seems to affect my everything, my head, ears, etc.

[Ennis-TX]

3 hours ago, Hannah Turner said:

As it is 4 weeks nearly now I was getting concerned, and was wondering if people had experienced these symptoms for this duration. Maybe it is because I was completely gluten-free and ate so much in one go that it has made it ten times worse. I have been told about peppermint oil capsules, have you tried them before? I have had bloods for all deficiencies and everything has come back normal. It seems to affect my everything, my head, ears, etc.

 

As it is 4 weeks nearly now I was getting concerned, and was wondering if people had experienced these symptoms for this duration. Maybe it is because I was completely gluten-free and ate so much in one go that it has made it ten times worse. I have been told about peppermint oil capsules, have you tried them before? It seems to affect my everything, my head, ears, etc.

It can take months for the reaction to die down, my last incident left me with come and go issues for months. And I seem to have suffered other issues that have not resolved for the past 9months. If you did indeed suffer ataxia damage, those will wean off over months-years. 

Just because your levels are "normal" does not mean they are right. Everyone is different in what they need and the "Normal" levels are outdated and just a minimum. Supplementing still might boost you up and make you feel a bit more normal.  I think someone else can repost the research on that.

Your body after being gluten-free "hits" much harder when it detects it again. Your "army" of an immune system was always tired and worn out previously and now hits it full strength, you also probably got used to many of your previous symptoms over the years and after finding a new normal got overwhelmed when they all came back. Consider it a combo of these.

Now there is a chance you could have damaged something else, caused a new food intolerance/sensitivity/allergy. Many of us here can attest to collateral damage with an exposure that leaves us with a more limited diet of some other quirk left behind. Keep a food diary and rotate your foods, testing your staples removing a few for a few days to a week. Might find something you were alright with now is an issue, common ones are dairy, nightshades, legumes, soy, peanuts, corn, garlic, onions, etc. Heck, it might just be temporary and you just have to stay away from what is making you feel sick/bogged down. 

Peppermint is something a few regulars swear by. it makes me nauseated and I have avoided it for years, but everyone is different.

[Hannah Turner]

7 minutes ago, Ennis_TX said:

It can take months for the reaction to die down, my last incident left me with come and go issues for months. And I seem to have suffered other issues that have not resolved for the past 9months. If you did indeed suffer ataxia damage, those will wean off over months-years. 

Just because your levels are "normal" does not mean they are right. Everyone is different in what they need and the "Normal" levels are outdated and just a minimum. Supplementing still might boost you up and make you feel a bit more normal.  I think someone else can repost the research on that.

Your body after being gluten-free "hits" much harder when it detects it again. Your "army" of an immune system was always tired and worn out previously and now hits it full strength, you also probably got used to many of your previous symptoms over the years and after finding a new normal got overwhelmed when they all came back. Consider it a combo of these.

Now there is a chance you could have damaged something else, caused a new food intolerance/sensitivity/allergy. Many of us here can attest to collateral damage with an exposure that leaves us with a more limited diet of some other quirk left behind. Keep a food diary and rotate your foods, testing your staples removing a few for a few days to a week. Might find something you were alright with now is an issue, common ones are dairy, nightshades, legumes, soy, peanuts, corn, garlic, onions, etc. Heck, it might just be temporary and you just have to stay away from what is making you feel sick/bogged down. 

Peppermint is something a few regulars swear by. it makes me nauseated and I have avoided it for years, but everyone is different.

Thank you so much for your response. Do you get dizzy, well it's not dizzy, it's weird feeling where you feel like you are walking in space. And my skin just feels different, all nervy and more sensitive but not, like I can't feel as much.

[Ennis-TX]

Just now, Hannah Turner said:

Thank you so much for your response. Do you get dizzy, well it's not dizzy, it's weird feeling where you feel like you are walking in space. And my skin just feels different, all nervy and more sensitive but not, like I can't feel as much.

I sorta bump into walls a lot more, misjudge distances and hit my shoulder on door frames in a sort of totter fashion, catch myself almost falling sometimes on stairs, drop stuff, find I lose heat and cold sensitivity and often burn myself, or cut myself. These stick around for a while and slowly taper off. My ataxia normally hits hard the first day within hours of consuming the offending food I can lose full motor control and end up on the floor.

[Hannah Turner]

3 minutes ago, Ennis_TX said:

I sorta bump into walls a lot more, misjudge distances and hit my shoulder on door frames in a sort of totter fashion, catch myself almost falling sometimes on stairs, drop stuff, find I lose heat and cold sensitivity and often burn myself, or cut myself. These stick around for a while and slowly taper off. My ataxia normally hits hard the first day within hours of consuming the offending food I can lose full motor control and end up on the floor.

Sounds awful. My hit me a few days later this time. But I still feel the same three weeks later. Well, a little bit better as my headaches have worn off but I am still so dizzy and have numbness and tingling. It's so hard to concentrate. I feel horrendous but have been to the docs and hosp numerous times and they can't do anything.

[cyclinglady]

Every celiac is different.  Reactions to gluten are different and so are healing times.  I am one of those who remains ill for months too.    Give it time.  I hope you feel better soon.  

[Ennis-TX]

26 minutes ago, Hannah Turner said:

Sounds awful. My hit me a few days later this time. But I still feel the same three weeks later. Well, a little bit better as my headaches have worn off but I am still so dizzy and have numbness and tingling. It's so hard to concentrate. I feel horrendous but have been to the docs and hosp numerous times and they can't do anything.

Just in case do check for symptoms deficiency in magnesium and various B-vitamins. Not only will you absorb less with a damaged gut, but they body uses more when doing repairs or under stress.

[Hannah Turner]

17 minutes ago, cyclinglady said:

Every celiac is different.  Reactions to gluten are different and so are healing times.  I am one of those who remains ill for months too.    Give it time.  I hope you feel better soon.  

What symptoms do you get?

[cyclinglady]

Vomiting, passing out, abdominal pain that occurs as soon as my stomach empties into the small intestine (I consume mushy, well-cooked foods then), hives, allergic reactions are way more severe, indigestion, anxiety, irrtability, fatigue, achy body, tingling, become lactose intolerant, constipation, diarrhea.  Yep, many things.  Symptoms can change too.  Celiac disease is like a chameleon.  Symptoms for me can last for about six months.  Most severe the first week and gradually getting better.  Within 4 to six weeks, my ab pain is diminished, but other symptoms linger.  I do have autoimmune Gastritis and thyroiditis and those can be triggered by a celiac flare up and can last much longer.  

Remember, each gluten exposure can set you back.  Personally, I never eat out now except at dedicated gluten-free restaurants.  The consequences are way too severe for me to justify a meal prepared by someone else.  This strategy works for me.  My last endoscopy revealed a healed small intestine.  

[Hannah Turner]

5 hours ago, ravenwoodglass said:

Your symptoms are not unusal nor is the duration for some of us. You have given your antibodies a good flare up. It is good that you went to the doctor to make sure that nothing else was going on. Be kind to your system as much as you can. Eat mostly whole foods for now and it is a good idea to cook your veggies and fruits well to make them easier to digest. You may want to drop dairy for bit if you consume as you may not be producing the enzyme to digest it until you have healed again. That may be contributing to your bloating. If you can rest do rest. You are not being lazy your body is healing and needs nutrition and time to heal again.

Sorry this happened to you and I hope you heal again quickly.

It’s so awful isn’t it. Do you ever get dizziness and a numb face? Mines just awful atm and I constantly think oh it must be something more serious  

4 minutes ago, cyclinglady said:

Vomiting, passing out, abdominal pain that occurs as soon as my stomach empties into the small intestine (I consume mushy, well-cooked foods then), hives, allergic reactions are way more severe, indigestion, anxiety, irrtability, fatigue, achy body, tingling, become lactose intolerant, constipation, diarrhea.  Yep, many things.  Symptoms can change too.  Celiac disease is like a chameleon.  Symptoms for me can last for about six months.  Most severe the first week and gradually getting better.  Within 4 to six weeks, my ab pain is diminished, but other symptoms linger.  I do have autoimmune Gastritis and thyroiditis and those can be triggered by a celiac flare up and can last much longer.  

Remember, each gluten exposure can set you back.  Personally, I never eat out now except at dedicated gluten-free restaurants.  The consequences are way too severe for me to justify a meal prepared by someone else.  This strategy works for me.  My last endoscopy revealed a healed small intestine.  

It’s so awful isn’t it. Do you ever get dizziness and a numb face? Mines just awful atm and Iconstantly think oh it must besomething more serious  

[cyclinglady]

You just need to be patient and avoid gluten at all costs.   Chances are you are still dealing with the consequences of your recent gluten exposure.  

Please keep researching celiac disease and how to avoid gluten.  Knowledge is your best defense.  

No, never dizziness or facial numbness for me, but everyone is different.  

[ravenwoodglass]

8 hours ago, Hannah Turner said:

 

It’s so awful isn’t it. Do you ever get dizziness and a numb face? Mines just awful atm and Iconstantly think oh it must besomething more serious  

I have ataxia and for me it is a feeling like walking on a ship that is in a high sea. I had ataxia since childhood and needed canes by the time I was diagnosed. Over 40 years later... Ataxia has pretty much resoved but I did need to get physical therapy to walk normally. I don't however feel dizzy thankfully. If the dizzy feeling sticks around after your other gluten symptoms resolve it might be a good idea to see an ear doctor just to be on the safe side. Sometimes our body gets so busy fighting the antibody reaction that other virus can sneak in.