Are These Symptoms Of Gluten Intolerance?

[Sunny1008]

Hello everyone,

I am new to this board. I am wondering if I might have gluten intolerance. About four months ago, I became very sick with stomach problems. I have had nearly every test done (including the blood test for Celiac disease), and they all came back negative. I know that the blood tests aren't that accurate, which is why I am still wondering if it could be gluten-related.

My symptoms, which began four months ago and continue, are:

Nausea

Loss of appetite

Feeling full all the time

Gagging and choking feelings in my throat

Stomach feels inflamed, almost like a sunburn

Stomach aches and pain

Gnawing in stomach

Constipation

15-20 pound weight loss

Bloating

Acid reflux

Belching

Severe anxiety

Depression

Fatigue

Can gluten intolerance affect the upper GI tract in this way? Because everything I have been reading suggests that it affects mainly the lower GI tract.

Thanks for any info you can provide!

Sunny

[Takala]

Yes, heartburn, acid reflux is a classic symptom.

always get copies of your test results. For both further reference and to re- check. You'd be surprised how often docs don't order anything resembling a "full" celiac blood panel.

You may have non celiac gluten intolerance, same problems with gluten, but without the diagnosis.

[Sunny1008]

Yes, heartburn, acid reflux is a classic symptom.

always get copies of your test results. For both further reference and to re- check. You'd be surprised how often docs don't order anything resembling a "full" celiac blood panel.

You may have non celiac gluten intolerance, same problems with gluten, but without the diagnosis.

Thanks Takala. I have copies of my test results. I am searching for a new doctor right now - one who is familiar with celiac disease and gluten intolerance.

[shellb65]

I could have written your post! I got really sick in February. My doctor had a serious of tests done including a blood test for celiac. Everything came back negative. My doctor had no faith in the blood test and kept telling me to go gluten free. I resisted. I didn't want to have to change my eating habits. I thought it would be too hard to do. My last doctors appt was 11 days ago. I got a good lecture from my doctor about going gluten free.. And I finally gave in. It's been 10 days now gluten-free and my symptoms are about 75% gone! Im amazed considering how sick I was. I still have some heartburn and Indijestion but the burning under my ribs disappeared yesterday. I can't wait to see my doctor again to tell him how much better I'm feeling. =) Im keeping my fingers crossed that this lasts!

[Sunny1008]

I could have written your post! I got really sick in February. My doctor had a serious of tests done including a blood test for celiac. Everything came back negative. My doctor had no faith in the blood test and kept telling me to go gluten free. I resisted. I didn't want to have to change my eating habits. I thought it would be too hard to do. My last doctors appt was 11 days ago. I got a good lecture from my doctor about going gluten free.. And I finally gave in. It's been 10 days now gluten-free and my symptoms are about 75% gone! Im amazed considering how sick I was. I still have some heartburn and Indijestion but the burning under my ribs disappeared yesterday. I can't wait to see my doctor again to tell him how much better I'm feeling. =) Im keeping my fingers crossed that this lasts!

Hi shellb65,

Glad to hear you are doing so much better! I have been off gluten for about two and a half weeks, and I have noticed improvement in my stomach symptoms. But I am still feeling ill overall. I have a lot of fatigue and I seem to have erratic blood sugar levels. I get very shaky, weak, feels like I am going to pass out. Don't know what's going on...

[squirmingitch]

Hi shellb65,

Glad to hear you are doing so much better! I have been off gluten for about two and a half weeks, and I have noticed improvement in my stomach symptoms. But I am still feeling ill overall. I have a lot of fatigue and I seem to have erratic blood sugar levels. I get very shaky, weak, feels like I am going to pass out. Don't know what's going on...

I'm going to say gluten withdrawal is going on. Happens to most all of us. Just put gluten withdrawal in the search box above & you'll come up with tons of posts about it. It WILL pass but since everyone is different we can't tell you how long it will last for you. I reacted exactly like you are feeling. You need to up your protein in the morning & make sure you get plenty of fats with the protein as well as with carbs. Example: eat an apple but also eat some cashews or peanuts with it or smear the slices with nut butters. Look for more complex carbs so they last longer & don't give you that drop. It's almost like you need to turn your meals upside down & have dinner for breakfast & breakfast for dinner. Get it? And ravenous hunger is a feature too. Normal. Eat. Your body is finally getting some nourishment now that it isn't being invaded by gluten & it's trying to heal itself. Eat! I would literally eat with one hand while vacuuming with the other! Normal.

[Sunny1008]

I'm going to say gluten withdrawal is going on. Happens to most all of us. Just put gluten withdrawal in the search box above & you'll come up with tons of posts about it. It WILL pass but since everyone is different we can't tell you how long it will last for you. I reacted exactly like you are feeling. You need to up your protein in the morning & make sure you get plenty of fats with the protein as well as with carbs. Example: eat an apple but also eat some cashews or peanuts with it or smear the slices with nut butters. Look for more complex carbs so they last longer & don't give you that drop. It's almost like you need to turn your meals upside down & have dinner for breakfast & breakfast for dinner. Get it? And ravenous hunger is a feature too. Normal. Eat. Your body is finally getting some nourishment now that it isn't being invaded by gluten & it's trying to heal itself. Eat! I would literally eat with one hand while vacuuming with the other! Normal.

Squirmingitch,

Thank you so much for the info. I wanted to cry with relief when I read your post because I truly thought I was going crazy! I do need to be better about my protein intake, especially in the morning. I will try the suggestions you mentioned - I like the apple with nut butter idea. I am glad to know that the withdrawal will eventually pass. Thank you!!!

Sunny

[squirmingitch]

YVW Sunny! BTW, my w/d lasted at least a whole month. And then I would still get days of feeling that way. The whole body has to re-set so to speak. You also should go get your vitamin levels tested so you know where they are now & supplement accordingly. Also probiotics --- if you can handle dairy then yogurt if not then you can take Culturelle. And if you haven't had your thyroid panel done lately then do so. And not just the TSH but the full thyroid panel.

But honestly, I felt like my knees were going to buckle numerous times a day.

I was so jealous of reading the "What's for breakfast" thread here b/c I couldn't get away with only eating a muffin or such! I was a veritable warthog! Now I am able to eat a rice cake loaded down with cashew butter & some locally farmed milk but I still need a little snack between breakfast & lunch.

[Sunny1008]

YVW Sunny! BTW, my w/d lasted at least a whole month. And then I would still get days of feeling that way. The whole body has to re-set so to speak. You also should go get your vitamin levels tested so you know where they are now & supplement accordingly. Also probiotics --- if you can handle dairy then yogurt if not then you can take Culturelle. And if you haven't had your thyroid panel done lately then do so. And not just the TSH but the full thyroid panel.

But honestly, I felt like my knees were going to buckle numerous times a day.

I was so jealous of reading the "What's for breakfast" thread here b/c I couldn't get away with only eating a muffin or such! I was a veritable warthog! Now I am able to eat a rice cake loaded down with cashew butter & some locally farmed milk but I still need a little snack between breakfast & lunch.

Thanks squirmingitch!! Another question: is it normal to have to eat a very bland diet until the GI tract heals? I have found that I have to stick to pretty bland stuff, i.e. baked chicken, rice, bananas, etc. I am not able to tolerate foods that I used to have no problem with, i.e. peanut butter, corn, red meat, very rich foods, etc. I am able to handle a little bit of dairy though.

Thanks!

Sunny

[squirmingitch]

Yup. Normal. We tell ppl to eat only whole foods for at least the first 3 months. Several reasons. 1) give the gut time to heal 2) gives you time to learn what foods have gluten & learn how to shop w/o being overwhelmed all at once 3) keeps you from getting glutened right off the bat. Most celiacs can't tolerate dairy for a while. Many get it back later; a few never do; some get it back after years.

If you haven't read this, do so. It will help immensely.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

About the foods you can't eat now ---- you will probably get them back later. But often, very often, & it's actually a wise thing to do --- is to limit your diet & add one food back per week & see how you do with it --- if it's a no go then quit it & try it again 6 months down the line. Keep a food log too --- makes it easier to figure out problem foods or figure out cross contamination or glutening. Your gut is a wreck right now so it's not accepting some things. As it heals you will be able to eat more things. The first 6 months can tend to be whacky too. Good days & bad days so expect to have sort of relapses. I would also leave off the corn for a good long while. Corn is hard even on normal ppl so it's not surprising you're having problems with it. Instead of peanut butter you might try cashew butter or sunflower seed butter OR Nutella which is hazelnut, cocoa & milk & sugars of course.

BTW, you can call me Squirmy --- everybody does. Too long to type the whole moniker.

[Sunny1008]

Yup. Normal. We tell ppl to eat only whole foods for at least the first 3 months. Several reasons. 1) give the gut time to heal 2) gives you time to learn what foods have gluten & learn how to shop w/o being overwhelmed all at once 3) keeps you from getting glutened right off the bat. Most celiacs can't tolerate dairy for a while. Many get it back later; a few never do; some get it back after years.

If you haven't read this, do so. It will help immensely.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

About the foods you can't eat now ---- you will probably get them back later. But often, very often, & it's actually a wise thing to do --- is to limit your diet & add one food back per week & see how you do with it --- if it's a no go then quit it & try it again 6 months down the line. Keep a food log too --- makes it easier to figure out problem foods or figure out cross contamination or glutening. Your gut is a wreck right now so it's not accepting some things. As it heals you will be able to eat more things. The first 6 months can tend to be whacky too. Good days & bad days so expect to have sort of relapses. I would also leave off the corn for a good long while. Corn is hard even on normal ppl so it's not surprising you're having problems with it. Instead of peanut butter you might try cashew butter or sunflower seed butter OR Nutella which is hazelnut, cocoa & milk & sugars of course.

BTW, you can call me Squirmy --- everybody does. Too long to type the whole moniker.

Hi Squirmy,

Thank you so much for the reassurance. I really need it! My gut is definitely a wreck! No other way to put it! I had a difficult night last night. I ate some strawberries before bed...BIG MISTAKE! I got maybe three hours of sleep - the rest of the night had burning and pain in my abdomen. So uncomfortable that I couldn't sleep. I guess strawberries are going to be on the "no go" list for me right now, probably because of the seeds. I'm glad you sent me the Newbie link - very informative.

A couple of other questions I have:

1. Is it common to be too sick to work? Since getting sick, I have had to take a leave of absence from work because my symptoms are so bad.

2. Is it common to have to take acid reducers during the healing process? For instance, I have had to take some today because of my bad episode last night.

Thanks again!

Sunny

[squirmingitch]

I've heard a number of ppl on this board who got too sick to work. And the antacid stuff --- sort of a hard call to make --- lots of celiacs actually have TOO LITTLE acid which is the opposite of acid indigestion but gives the same type effect.

Let me see if I can get a couple of the more experienced ppl on here to help you with that.

[Sunny1008]

I've heard a number of ppl on this board who got too sick to work. And the antacid stuff --- sort of a hard call to make --- lots of celiacs actually have TOO LITTLE acid which is the opposite of acid indigestion but gives the same type effect.

Let me see if I can get a couple of the more experienced ppl on here to help you with that.

OK, thanks Squirmy. I did a search and found some threads about people not being able to work, at least in the beginning during the healing process.

[IrishHeart]

Hi Sunny,

The Squirmster has done a great job answering your questions and I am not sure I can add much more except to say, if you need an antacid, take it. Eventually, you will find you no longer need them.

Just make sure it is gluten free.

My ENTIRE GI tract was in flames: burning mouth, throat all the way to my rectum. I had heartburn so bad for 12 years, then, pain in my chest, under my ribs, abdomen, everywhere. All gone now.

Some people are too ill to work (I was) but many rebound quickly and get their sea legs back right away.

If there is one thing for sure about celiac, it's EVERYONE is different, there is no set healing time and no one can say for sure when you will feel better.

Just hang in there, drink a lot of water, take Probiotics and keep your diet clean at first--nice and simple. I had to always eat a protein with a carb because of blood sugar issues, so keep that in mind.

Good luck. You're going to be okay.

[Sunny1008]

Hi Sunny,

The Squirmster has done a great job answering your questions and I am not sure I can add much more except to say, if you need an antacid, take it. Eventually, you will find you no longer need them.

Just make sure it is gluten free.

My ENTIRE GI tract was in flames: burning mouth, throat all the way to my rectum. I had heartburn so bad for 12 years, then, pain in my chest, under my ribs, abdomen, everywhere. All gone now.

Some people are too ill to work (I was) but many rebound quickly and get their sea legs back right away.

If there is one thing for sure about celiac, it's EVERYONE is different, there is no set healing time and no one can say for sure when you will feel better.

Just hang in there, drink a lot of water, take Probiotics and keep your diet clean at first--nice and simple. I had to always eat a protein with a carb because of blood sugar issues, so keep that in mind.

Good luck. You're going to be okay.

Hi IrishHeart,

Thanks for the advice and reassurance. I am glad to know I am not the only one who feels like their entire GI tract is on fire. I have this horrible gagging sensation in my throat, especially when I eat the wrong things. Not to mention the burning in my stomach. AAHHH! I am going to keep my diet as simple as possible right now with lots of whole foods. I hope I am on the right track.

Thanks again!

Sunny

[IrishHeart]

Just try to be patient. It takes time to heal that entire area.

I know it's not easy when you hurt. Hang in there.

[squirmingitch]

I knew IH had all that burning stuff --- YUK! That's why I asked her to talk to you. Celiac almost killed her but she's healing & feeling a whole lot better.

I've read many times ppl on here saying they get that throat thing too.

We're here for you. You can ask questions, moan, groan, whine & vent or anything in between! We get it.

[Sunny1008]

I knew IH had all that burning stuff --- YUK! That's why I asked her to talk to you. Celiac almost killed her but she's healing & feeling a whole lot better.

I've read many times ppl on here saying they get that throat thing too.

We're here for you. You can ask questions, moan, groan, whine & vent or anything in between! We get it.

Thanks Squirmy! Yeah, the burning feeling and the gagging in the throat thing are horrible. I am sure I will have lots more questions and moans and groans. Like for instance, when I talked to my GI doctor yesterday and he said, "There's nothing wrong with you. You're fine." UGGHH!

[squirmingitch]

Aw what do they know?

A billion times docs have said that to ppl here. You're lucky the doc didn't say it's all in your head; you need some anit-depressants. If they can't fix it with a pill or surgery they aren't interested. Actually had a doc tell me & hubs once, "There has to be a carrot at the end of the day." ---- Yeah, works both ways jerk!

[Sunny1008]

Aw what do they know?

A billion times docs have said that to ppl here. You're lucky the doc didn't say it's all in your head; you need some anit-depressants. If they can't fix it with a pill or surgery they aren't interested. Actually had a doc tell me & hubs once, "There has to be a carrot at the end of the day." ---- Yeah, works both ways jerk!

Hi Squirmy,

Actually, the doctor did tell me that it's all in my head, that I need to be on anti-depressants, and he even suggested that I have an eating disorder! I know for a fact that it's not all in my head and that I do NOT have an eating disorder, and I was really insulted when he said that.

And yes, I completely agree with you about doctors! I cannot tell you how many prescriptions for pills I have been given over the past few months!

[squirmingitch]

Oh yeah. Same old story.

And if one is skinny you have an eating disorder not celiac. And if one is overweight you have an eating disorder not celiac.

[IrishHeart]

I cannot tell you how many prescriptions for pills I have been given over the past few months!

You should see the shoebox full of crap I have that they gave me.

Pain meds, anti-depressants, xanax, sleep meds, valium, etc. etc. Told me to get a "scooter" to get around. Accept my fate. Stop stressing. Take these drugs! Anything to get the complaining middle-aged woman out of the office.

A scooter? really ? I was 50 years old!

Imagine how many people settle for this BS and remain sick and drugged up? TONS !! which is why I make sure I tell anyone I meet who has the same symptoms---"you are probably gluten intolerant because, lady, you sound just like me!"

[Sunny1008]

You should see the shoebox full of crap I have that they gave me.

Pain meds, anti-depressants, xanax, sleep meds, valium, etc. etc. Told me to get a "scooter" to get around. Accept my fate. Stop stressing. Take these drugs! Anything to get the complaining middle-aged woman out of the office.

A scooter? really ? I was 50 years old!

Imagine how many people settle for this BS and remain sick and drugged up? TONS !! which is why I make sure I tell anyone I meet who has the same symptoms---"you are probably gluten intolerant because, lady, you sound just like me!"

Oh my gosh, that is too funny about the scooter! Why did they want to give you a scooter? It really is sad how doctors are these days - treat the symptoms instead of treating the cause.

How long has it taken for you to feel better?

[IrishHeart]

Oh my gosh, that is too funny about the scooter! Why did they want to give you a scooter? It really is sad how doctors are these days - treat the symptoms instead of treating the cause.

How long has it taken for you to feel better?

I was having trouble walking and moving. My joints/bones/muscles, tissues, and tendons were deeply impacted. I could not sit, stand, walk or lie down without agonizing pain. I had numbness and nerve burning pain. I had ataxia, vertigo and dizziness. I could not focus or walk straight at times.

I have slowly started to recover. It's 18 months and I still have a long road. But the major GI stuff is resolved and I just keep working on rehabbing my muscles. I had dozens of symptoms.

This is what long-unDXed celiac can cause.

[Sunny1008]

I was having trouble walking and moving. My joints/bones/muscles, tissues, and tendons were deeply impacted. I could not sit, stand, walk or lie down without agonizing pain. I had numbness and nerve burning pain. I had ataxia, vertigo and dizziness. I could not focus or walk straight at times.

I have slowly started to recover. It's 18 months and I still have a long road. But the major GI stuff is resolved and I just keep working on rehabbing my muscles. I had dozens of symptoms.

This is what long-unDXed celiac can cause.

Oh my gosh, IrishHeart, you poor thing! I am sorry you have suffered so much, but I am glad you are doing better now.

Question: did you ever wake up in the middle of the night with GI distress?? I wake up practically every single night with some kind of GI distress - nausea, stomach pain, acid reflux, gagging/choking feelings, etc...And sometimes I lose several hours of sleep.

Thanks,

Sunny