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Does This Sound Like A Reaction To Gluten?

nasalady

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nasalady Contributor
nasalady
Posted

Just a quick question for those of you who are more experienced at this stuff....

I was gluten-free for exactly eight days (well, I THOUGHT I was gluten-free until I read the posts on this site that say that you have to get rid of your pots and pans and cutting boards and buy all new equipment!), and then I went back on gluten on Sunday because I want to be tested. I did feel better off gluten.

After reading Gerri's experiences on the "14th Day" thread, I was scared. But my reactions to going back on gluten were not nearly as dramatic. On Sunday, the only thing that happened was that I felt tired and a little bloated. On Monday I developed gas and more bloating, but I wasn't really sick or anything. But today I woke up with a stomach ache, and I felt really dizzy. Brain fog all day, and total exhaustion. Plus I have sores on my tongue....is that part of it?

I guess this isn't really a "challenge" because I'd have to be gluten-free for longer, and I'd have to be REALLY gluten-free for any of this to count.

Could such delayed reactions be consistent with celiac disease? Or should I be sicker than I am?

Of course, please keep in mind that I have autoimmune hepatitis, Hashimoto's thyroiditis, and fibromyalgia....some of these symptoms could be caused by those illnesses. How do you manage to sort out what symptom is caused by which disease?

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frec Contributor
frec
Posted

I don't know about Hashimoto or hepatitis symptoms--hopefully someone else will chime in with some info on that--but all of your symptoms are also classic celiac symptoms. I always had fairly immediate bloating with delayed diarrhea and chronic mouth ulcers. Many people on this forum talk about brain fog and exhaustion as symptoms. Some people show very few symptoms but, when finally tested, their intestines are quite damaged. Everyone reacts differently--that is one of the reasons it is hard to diagnose.

My reactions to gluten have become more immediate and more severe the longer I have been off it.

Good luck--

Ursa Major Collaborator
Ursa Major
Posted

Actually, all of those reactions are consistent with celiac disease. As are fibromyalgia and Hashimotos's, which could have been caused by celiac disease to begin with.

Your fibro may clear up completely on a gluten-free diet, by the way. And yes, I always get delayed reactions from gluten. They may not be apparent for a day or two, and then they will hit with force.

nasalady Contributor
nasalady
Posted
  • Author

Thanks, frec and Ursa Major. Knowing that delayed reactions can happen and also that gluten reactions can vary quite a bit from person to person is helpful.

My first appointment with the gastroenterologist is scheduled for September 5th....it was the earliest appointment I could get. Oh well.... :rolleyes:

Gerri Explorer
Gerri
Posted

Hi JoAnn

Hope you don't mind I tried to show what I am going through. I did put important message in this note. (NO NIACIN for you ever, a vitamin B, not with you having liver problems.)Already knew I had hepatitis A. Seems my whole family has it since living on the farm.

Another thought though, many years ago when I was much younger, it seemed every Holiday, just before the holiday I was alway sick. My family always went visiting just before the holidays. All the goodies, (made from lots of Gluten), and the day before the holiday, I was always sick. Never thought about this until now. I had celiac going back to when I was child. All the ear aches, all the sore stomachs, always falling, and all the brain fog. Everything then was described as the common flu.

Day 24 (July 30, 2008)

Going little crazy - Insomnia and sleep apnea higher as I was out in sun - Rash on face, arms and legs, walked only from car parked in front of store, walked into store . That night I even was dreaming (thought impossible with sleep apnea, who know. Can only go my readings on CPAP)

- using many pillows to control movement at night - harder each day to get out of bed next morning

- Swelling in hands still bad - Eyes swelling severely - seems to be getting worse everyday- jaw pain much of the time

- ongoing ear aches, neck and glands

- Asthma- taking inhalers especially at night - use them at least twice a day

- depression increasing - Brain fog bad

- don't get anything done

- severe back right rib pain - right side - also in right ribs- doubled over severe pain in right groin - much pain all over - pain level about 7 - no medication so can't bring this number down - going swimming helps

- perception of things very off (might find dishes in fridge), Severe Auditory Processing disorder worsing - avoiding people

- Continue to eat at least 5 gluten a day

- heart burn not as bad - take more allergy pills for my allergy of sulfites in bread - seems to help gerds - not eating before bed

- stomach bloating severe - hard time moving around - continuing to falling into things

- Feel alright before breakfast then day gets much worse as I eat my daily intake of gluten.

- pimples that hurt, and turn to sores are popping up all over my body.- Ongoing itching- severe

Was up to hospital week ago Tuesday, liver enzymes really out of whack. Had hamburger helper, with a trace of niacin tha night before (big big no no) - Don't whatever you do take niacin if you have liver problems. Any rate, found out also had kidney bladder infection.

AST/SGOT normal (5-40 U/L) *** mine high @ 117

ALT normal (24-57 U/L) *** mine high @ 197

Alkaline Phos normal (40-130 U/L) *** mine high @ 199

LDH normal (100-190 U/L) *** mine high @ 290

Urinalysis

ULeucocytes 500/UL High

Ublood 10/UL

No medication given because of allergies - just drinking more fluids because of kidney, bladder infection.

I tried to get into family doctor before he went on holiday, instead they booked a day after the holiday (August 8th) - obviously not concerned. Both my GASTRO and family doctors are on holidays.

Going away this Saturday, not looking forward to this weekend. Good possiblity back in hospital on Monday we will see.

Hugs

Gerri

PS: JoAnn - just a little note - I believe your Celiac- I also believe Celiac caused my liver problems as it is causing yours - remember back to the gluten filled holidays - were you always sick before he holiday?

nasalady Contributor
nasalady
Posted
  • Author
Hope you don't mind I tried to show what I am going through. I did put important message in this note. (NO NIACIN for you ever, a vitamin B, not with you having liver problems.)Already knew I had hepatitis A. Seems my whole family has it since living on the farm.

Of course I don't mind...it's very informative, just a little scary! :) Thanks for the tip about niacin...I didn't know that.

Day 24 (July 30, 2008)

Going little crazy - Insomnia and sleep apnea higher as I was out in sun - Rash on face, arms and legs, walked only from car parked in front of store, walked into store . That night I even was dreaming (thought impossible with sleep apnea, who know. Can only go my readings on CPAP)

- using many pillows to control movement at night - harder each day to get out of bed next morning

- Swelling in hands still bad - Eyes swelling severely - seems to be getting worse everyday- jaw pain much of the time

- ongoing ear aches, neck and glands

- Asthma- taking inhalers especially at night - use them at least twice a day

- depression increasing - Brain fog bad

- don't get anything done

- severe back right rib pain - right side - also in right ribs- doubled over severe pain in right groin - much pain all over - pain level about 7 - no medication so can't bring this number down - going swimming helps

- perception of things very off (might find dishes in fridge), Severe Auditory Processing disorder worsing - avoiding people

- Continue to eat at least 5 gluten a day

- heart burn not as bad - take more allergy pills for my allergy of sulfites in bread - seems to help gerds - not eating before bed

- stomach bloating severe - hard time moving around - continuing to falling into things

- Feel alright before breakfast then day gets much worse as I eat my daily intake of gluten.

- pimples that hurt, and turn to sores are popping up all over my body.- Ongoing itching- severe

Was up to hospital week ago Tuesday, liver enzymes really out of whack. Had hamburger helper, with a trace of niacin tha night before (big big no no) - Don't whatever you do take niacin if you have liver problems. Any rate, found out also had kidney bladder infection.

AST/SGOT normal (5-40 U/L) *** mine high @ 117

ALT normal (24-57 U/L) *** mine high @ 197

Alkaline Phos normal (40-130 U/L) *** mine high @ 199

LDH normal (100-190 U/L) *** mine high @ 290

Urinalysis

ULeucocytes 500/UL High

Ublood 10/UL

No medication given because of allergies - just drinking more fluids because of kidney, bladder infection.

I tried to get into family doctor before he went on holiday, instead they booked a day after the holiday (August 8th) - obviously not concerned. Both my GASTRO and family doctors are on holidays.

Going away this Saturday, not looking forward to this weekend. Good possiblity back in hospital on Monday we will see.

Wow! Are you going to be OK? Are you sure that getting tested is worth all of this??

PS: JoAnn - just a little note - I believe your Celiac- I also believe Celiac caused my liver problems as it is causing yours - remember back to the gluten filled holidays - were you always sick before he holiday?

Yes, I do remember being "sick", especially my "IBS" getting worse around the holidays. I always attributed that to the rich food, but didn't connect it with gluten of course, because I thought I just had IBS! Diarrhea was always a problem....but I never would have thought of celiac disease.

Hope that you're still surviving!

Take care,

JoAnn

nasalady Contributor
nasalady
Posted
  • Author

P.S. This is my eighth day back on gluten, and I should add that the sores on my tongue have now spread all over my entire mouth, and it feels like I have blisters on the roof of my mouth. It's kind of hard to eat anything right now because it hurts.

I'm also very tired and very forgetful.....brain fog strikes again. For example, I think of something I need to tell my husband but by the time I walk from one room to the other to speak to him, I've forgotten what I wanted to say!! LOL!

Well, maybe it's really NOT funny. :(

JoAnn

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Gerri Explorer
Gerri
Posted

Hi JoAnn

Brain fog really bad. I knew mild dylexia and severe auditory processing disorder, but they both are getting really bad. Went to have doctor's address instead of 564 I game them 654. I just woke up and I making so many mistages.

I have few sores in my mouth not like you.

Just started on medication for my bladder infection. So tired all the time.

My step-son is visiting, I keep calling him by another name, talk about Brain fog.

JoAnn, get your blood checked often while your doing this because, it could tell how your liver is doing and your bladder as well.

My blood for celiac supposedly came back neg. When Gastro seen how much my other blood work (liver enzymes, cholesterol, sugar etc.) improved, she believe that this was also sign for celiac. Now they are totally out of whack again.

My whole stomach seems to be in a knot and sore.

hope you don't get any sorer.

Hugs

Gerri

Kitt1027 Rookie
Kitt1027
Posted

Hello all! I am very new to this site. I've been hearing about Celiac for a couple of years now, but before that didn

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    • catnapt
      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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