Please tell me this is normal

[Crispy chick]

Day 13 Gluten free. My original symptoms of nausea, dizziness and general malice are elevated???! I feel dreadful. With headache on top. Day 13 - withdrawl really??? Or is it proof gluten is not my problem all along? Still awaiting biopsy results..... 

[GFinDC]

It is normal to have continuing symptoms for quite a while after going gluten-free.  Celiac disease is an autoimmune condition.  The immune system does not stop making antibodies the minute you go gluten-free. It may continue to produce antibodies as long as it wants.  But probably it will taper them off after a month or so.  But everyone's body varies.

Of course if you accidientally get some gluten cross contamination the immune attack will just keep going.  Or start back up in force.

If you can stay 100% gluten-free then you should start noticng improvements after a month or so,  But it takes time to heal the body and repair the villi.  So your digestion may be off off for quite a while.  It can help to reduce/eliminate carbs and sugars from you diet, including dairy.  Also stick with a very simple diet of meats. veggies, nuts and eggs.  No oats.

After 6 months of that try slowly expanding your diet to include baked goods, dairy, and oats.  We all heal at our own rate and there is on way for us to know  how fast your body will recover or how gluten-free you will be.

[wetcat]

I went through withdrawals from gluten for the first 2 weeks. Headaches, mood swings, and the feeling like I wanted to gnaw on something. After you get gluten completely out of your system, you should start to feel better. This could take up to a month (and only if you don't make any mistakes). If you accidentally ingest gluten, your reaction will now probably be more extreme than it used to be.

[Beverage]

For about a month, I felt like I'd been hit by a truck, a really really big truck. Aches like the worst flu of my life, but no coughing/sneezing.  Just awful.  Drink lots and lots of water, that's the only thing that seemed to help me, and just laid low for awhile.

 

[Shy]

I immediately felt better a few days after accidentally taking gluten out of my diet. When I went back to my, at the time, regular diet I immediately got sick again. That's how we initially realized I had a problem with eating gluten.

Are you getting the same amount of carbohydrates just in a different form? Like rice, potatoes,corn, ect..  I've had the symptoms you've described when we've tried very low carb or no carb ketogenic type diets for weight loss.

If you noticed improvements in some symptoms when you don't have gluten but not an improvement in others maybe your sensitivities are to herbicides. Wheat has some of the highest concentrations of herbicide residue compared to other grains and food plants. Some people cut gluten out of their diet thinking they have a gluten sensitivity, but find if they eat organic gluten products they don't have any problems. Another thing to consider you could have multiple food sensitivities or allergies. It seems more common for people with gluten sensitivities to also have issues with dairy or additional foods.

Also with the chronic acid reflux it sounded like you might have some damage to your esophagus and stomach. Your stomach will probably be overly sensitive to everything until it can heal especially to acidic foods or caffeine. Maybe look into combining GERD friendly diet with your gluten free menu.

[catusmc]

On 6/11/2019 at 5:48 AM, wetcat said:

I went through withdrawals from gluten for the first 2 weeks. Headaches, mood swings, and the feeling like I wanted to gnaw on something. After you get gluten completely out of your system, you should start to feel better. This could take up to a month (and only if you don't make any mistakes). If you accidentally ingest gluten, your reaction will now probably be more extreme than it used to be.

Hey Wetcat, I see this is your most recent post and am hoping you will respond. I am suspecting that I have ataxia but to only rice and not gluten. What are your symptoms and is there any treatment besides avoidance?

[cyclinglady]

2 hours ago, catusmc said:

Hey Wetcat, I see this is your most recent post and am hoping you will respond. I am suspecting that I have ataxia but to only rice and not gluten. What are your symptoms and is there any treatment besides avoidance?

I think you should consider getting tested for celiac disease in order to help rule out gluten ataxia.  Why?  I just had anemia.  No GI issues with gluten.  I never would have guessed that I had celiac disease.  

[Ennis-TX]

8 hours ago, catusmc said:

Hey Wetcat, I see this is your most recent post and am hoping you will respond. I am suspecting that I have ataxia but to only rice and not gluten. What are your symptoms and is there any treatment besides avoidance?

With ataxia avoidance is the only way to prevent it. Mine attacks my nervous system and brain, and last major CC damaged the nerves to my pancreas so carbs have to be avoided now and I have to take pig pancreas enzymes with meals. there is some other brain and nerve damage, and they slowly heal will probably be decades if ever that I regain the ability to work with complex math, and computer programing again or have full sensitivity to touch, hot, and cold in my hands.

Mine is very dependent on the foods it seems, so yours might be the same IE the ataxia reaction only occurs to one of the gluten grains like rye, barley, or wheat. Your rice could have had a errant barley or rye grain in it.

If you can eat wheat gluten without an ataxia reaction then keep eating it and get tested for celiac disease. Try Vital Wheat gluten few tsp a day or just eat 1-2 slices of bread a day The blood test requires you do this for 8-12 weeks and the endoscope with biopsy is 2 weeks.

If your just getting checked for ataxia the damage shows up as white dots/spots on a MRI, I used to have a lot of material on ataxia but the official website pulled all the powerpoints.

[Fenrir]

I felt awful the first week or two of gluten-free, but after that I rapidly started to feel better and after about a month most of my symptoms were gone or greatly reduced. 

[catusmc]

13 hours ago, Ennis_TX said:

With ataxia avoidance is the only way to prevent it. Mine attacks my nervous system and brain, and last major CC damaged the nerves to my pancreas so carbs have to be avoided now and I have to take pig pancreas enzymes with meals. there is some other brain and nerve damage, and they slowly heal will probably be decades if ever that I regain the ability to work with complex math, and computer programing again or have full sensitivity to touch, hot, and cold in my hands.

Mine is very dependent on the foods it seems, so yours might be the same IE the ataxia reaction only occurs to one of the gluten grains like rye, barley, or wheat. Your rice could have had a errant barley or rye grain in it.

If you can eat wheat gluten without an ataxia reaction then keep eating it and get tested for celiac disease. Try Vital Wheat gluten few tsp a day or just eat 1-2 slices of bread a day The blood test requires you do this for 8-12 weeks and the endoscope with biopsy is 2 weeks.

If your just getting checked for ataxia the damage shows up as white dots/spots on a MRI, I used to have a lot of material on ataxia but the official website pulled all the powerpoints.

I actually had a brain MRI during my first episode last year because they wanted to rule out a stroke. My MRI said cavernous malformation with veinous anomaly but the doctor said my MRI was normal. I was wondering if you had specific terminology for your damage?

[catusmc]

13 hours ago, Ennis_TX said:

With ataxia avoidance is the only way to prevent it. Mine attacks my nervous system and brain, and last major CC damaged the nerves to my pancreas so carbs have to be avoided now and I have to take pig pancreas enzymes with meals. there is some other brain and nerve damage, and they slowly heal will probably be decades if ever that I regain the ability to work with complex math, and computer programing again or have full sensitivity to touch, hot, and cold in my hands.

Mine is very dependent on the foods it seems, so yours might be the same IE the ataxia reaction only occurs to one of the gluten grains like rye, barley, or wheat. Your rice could have had a errant barley or rye grain in it.

If you can eat wheat gluten without an ataxia reaction then keep eating it and get tested for celiac disease. Try Vital Wheat gluten few tsp a day or just eat 1-2 slices of bread a day The blood test requires you do this for 8-12 weeks and the endoscope with biopsy is 2 weeks.

If your just getting checked for ataxia the damage shows up as white dots/spots on a MRI, I used to have a lot of material on ataxia but the official website pulled all the powerpoints.

Actually I just found the document. It says "Small left parietal white matter developmental venous anomaly with probable associated cavernous malformation. No adjacent edema or acute hemorrhage."

[BuddhaBar]

On 6/7/2019 at 12:28 PM, Crispy chick said:

Day 13 Gluten free. My original symptoms of nausea, dizziness and general malice are elevated???! I feel dreadful. With headache on top. Day 13 - withdrawl really??? Or is it proof gluten is not my problem all along? Still awaiting biopsy results..... 

Sugar withdrawl. Starch breaks down into sugars when digested. With no gluten in your diet, you don't consume as much starch as before.
Went through the same thing. Fatigue, nausea, headache. And I was hungry all the time and had severe sugar cravings. The headache was the worse symptom though. Then one day it was suddenly gone. 
You'll be alright. Just be patient and give it some time.