Now it's my turn

[Feeneyja]

I have been here for my daughter who has severe gluten intolerance, but no celiac diagnosis. We are all gluten free in our house so as not to harm her. But I have noticed that, when dining out or at someone else's house, I don't feel well after eating gluten.

Now I'm wondering about a lifetime of health issues that suddenly make sense: anemic off and on most of my life; episodes of headaches and vomiting; lots of mouth sores; sick a lot as a kid; in 8th grade lost LOTS of weight (accused of being anorexic); went through a "healthy" period where we ate lots of homemade whole wheat bread, wheat berries, rye berries, barley and I proceeded to lose 30  lbs, lose my hair, and had perpetually loose stools.  Broke 2 bones for no apparent reason (did have a bone scan after the second break but it was normal). 

We went gluten free and I have felt great.  But I didn't think anything of it.   

Now, I notice I feel nauseated and my stomach is just uncomfortable and churning, my legs cramp, and I get mouth sores when I eat gluten. It never occurred to me to think about my health when we went gluten free for my daughter. 

Now I'm starting my own gluten challenge.   Please tell me that 6 weeks is long enough!  I have been seeing that they are now recommending 12 weeks.  

[Ennis-TX]

12 weeks is the standard for the blood test, >.> you might get lucky and get by with 6 weeks I think I saw someone post about doing that in the past couple of months.

[Feeneyja]

Thanks.  I just looked at U of C and they say the same. Boo. 

A couple of years ago they said only 6. It was when my daughter was undergoing her gluten challenge.  There was even a paper published at that time that said you might be able to get away with only a 2 week challenge.  Clearly everyone is different. 

[frieze]

if you can afford the testing twice, do it.

[Victoria5289]

13 hours ago, Feeneyja said:

I have been here for my daughter who has severe gluten intolerance, but no celiac diagnosis. We are all gluten free in our house so as not to harm her. But I have noticed that, when dining out or at someone else's house, I don't feel well after eating gluten.

Now I'm wondering about a lifetime of health issues that suddenly make sense: anemic off and on most of my life; episodes of headaches and vomiting; lots of mouth sores; sick a lot as a kid; in 8th grade lost LOTS of weight (accused of being anorexic); went through a "healthy" period where we ate lots of homemade whole wheat bread, wheat berries, rye berries, barley and I proceeded to lose 30  lbs, lose my hair, and had perpetually loose stools.  Broke 2 bones for no apparent reason (did have a bone scan after the second break but it was normal). 

We went gluten free and I have felt great.  But I didn't think anything of it.   

Now, I notice I feel nauseated and my stomach is just uncomfortable and churning, my legs cramp, and I get mouth sores when I eat gluten. It never occurred to me to think about my health when we went gluten free for my daughter. 

Now I'm starting my own gluten challenge.   Please tell me that 6 weeks is long enough!  I have been seeing that they are now recommending 12 weeks.  

This sounds like you have chromes disease 

[Feeneyja]

Saturday was the symptoms I have been feeling amplified big time:  Terrible nausea, head ache, dizziness, stomach gurgling, fatigue. And the constipation/strange BMs.  Wasn't prepared for that one. 

I sort of took Sunday off and felt a bit better, now the dizziness is ramping up again.  I'm planning on taking a break once a week. Hopefully that's ok. 

I do have an appointment with a GI for June 7th. There were no openings until mid July when I called and while I was speaking to the nurse someone must have cancelled and so I grabbed the early June appointment. 

But this is all like deja vu. This is exactly how I would feel growing up and most of my life.   Headache, dizzy, nausea.  And the sores on the roof of my mouth!  Ugh. 

[cyclinglady]

4 hours ago, Feeneyja said:

Saturday was the symptoms I have been feeling amplified big time:  Terrible nausea, head ache, dizziness, stomach gurgling, fatigue. And the constipation/strange BMs.  Wasn't prepared for that one. 

I sort of took Sunday off and felt a bit better, now the dizziness is ramping up again.  I'm planning on taking a break once a week. Hopefully that's ok. 

I do have an appointment with a GI for June 7th. There were no openings until mid July when I called and while I was speaking to the nurse someone must have cancelled and so I grabbed the early June appointment. 

But this is all like deja vu. This is exactly how I would feel growing up and most of my life.   Headache, dizzy, nausea.  And the sores on the roof of my mouth!  Ugh. 

Sorry that you are feeling unwell!  Hang in there!  

[Feeneyja]

Thanks cyclinglady.  

Any advice for the constipation?  I was really anticipating D because that's what I would experience when eating gluten recently (which lead to this challenge.) It's really funny. I feel like I need to dash off to the bathroom, lots of gurgling in my gut, but not much moving. 

 

[Ennis-TX]

1 hour ago, Feeneyja said:

Thanks cyclinglady.  

Any advice for the constipation?  I was really anticipating D because that's what I would experience when eating gluten recently (which lead to this challenge.) It's really funny. I feel like I need to dash off to the bathroom, lots of gurgling in my gut, but not much moving. 

 

Magnesium Citrate....only thing that ever worked for me, You can get the laxative form in a bottle of liquid. or you can use Natural Vitality Calm and 2-6x the dose on it.

No seriously nothing else ever works for my gluten constipation... 1 whole bottle of miralax.....nothing....2 boxes of exlax...nothing....1 1/2 bottle magnesium citrate and I go in the next 6 hours.

[Victoria1234]

1 hour ago, Feeneyja said:

Thanks cyclinglady.  

Any advice for the constipation?  I was really anticipating D because that's what I would experience when eating gluten recently (which lead to this challenge.) It's really funny. I feel like I need to dash off to the bathroom, lots of gurgling in my gut, but not much moving. 

 

Milk of magnesia is the only thing that works for me. 2Tb and a big glass of water. I used to have that problem all the time. I mean for years.  Now I eat a serving of vegetable soup every day. It's homemade from bone broth we make ourselves. We get the bones from the local butcher, cover with water and cook for 24 hours. Add veggies (sometimes cooked in bacon grease!)  and cook till tender. Then grind up in food processor and add coconut milk, from a can and add salt and pepper to taste. Keeps me absolutely regular unless I skip a day.

[Feeneyja]

Thank you ennis and victoria. I will give it a try. 

[Scuff]

18 hours ago, Feeneyja said:

Thanks cyclinglady.  

Any advice for the constipation?  I was really anticipating D because that's what I would experience when eating gluten recently (which lead to this challenge.) It's really funny. I feel like I need to dash off to the bathroom, lots of gurgling in my gut, but not much moving. 

 

I hear ya. I spend all day in the bathroom *thinking* something's going to happen. lol

 

[Feeneyja]

Exactly!!

Scuff, are you doing the gluten challenge?  How far along are you?  

[Scuff]

Yeah. I went off gluten, doing Whole30 for 2 months. Then found out it was a mistake. Oops. So, I'm back on gluten and have a GI appointment at the end of June. 3 weeks so far. :/  It is easier than it was at first. I had a headache for 2 weeks straight. Thankfully that has passed. My symptoms are more constant and dull now instead of extreme. How much gluten are you eating? I started at just 1 slice of bread, but have been trying to up it, since Google seems to be mixed on how much is necessary. 

[Feeneyja]

Some days I have 3 pieces of bread, other days I just can't handle more than 1.  I had to take a day of gluten rest after the first week.  I felt too aweful. Now I'm almost done with week 2 and I feel like I need another break.  Just so hard to do something to yourself that you know will hurt. 

They just don't know how much and for how long.  There was a recent study that looked at gluten challenges in folks actually diagnosed with celiac and some took months to have elevated antibodies.  

Just one day at a time.  I hope things go well for you. 

[Ennis-TX]

You would honestly think that after you body goes nuts attacking your insides trying to kill the gluten after 2 days of food poisoning yourself with it the damn antibodies would show up in insane levels in your blood Life is not that easy though.

[Feeneyja]

I should qualify that I'm actually consuming the equivalent of 1-3 slices of bread in the form of vital wheat gluten. Sometimes I have bread, if I'm eating out. But I don't really want all of the carbs and I want to demonstrate that it actually IS the gluten causing the problems and not a Fodmap issue.  My reaction to bread and my reaction to the gluten are the same. 

I'm actually shocked at how quickly things have changed. My hair is starting to thin again (boo hoo ?), and my stools are completely different and it's only been about two weeks. The headache and dizziness and nausea are the worst. 

Ennis, you are right. You would think that all of these symptoms would show on blood work. Grrr. I'm hoping that the GI I'm seeing on June 7th will run a preliminary full celiac panel.  It will only be 4 weeks by then.  Will it show something?  My sister has her PhD in immunology and I remember her saying how difficult research in immunology is because you need clearly high antibodies to demonstrate anything. 

[Ennis-TX]

37 minutes ago, Feeneyja said:

I should qualify that I'm actually consuming the equivalent of 1-3 slices of bread in the form of vital wheat gluten. Sometimes I have bread, if I'm eating out. But I don't really want all of the carbs and I want to demonstrate that it actually IS the gluten causing the problems and not a Fodmap issue.  My reaction to bread and my reaction to the gluten are the same. 

I'm actually shocked at how quickly things have changed. My hair is starting to thin again (boo hoo ?), and my stools are completely different and it's only been about two weeks. The headache and dizziness and nausea are the worst. 

Ennis, you are right. You would think that all of these symptoms would show on blood work. Grrr. I'm hoping that the GI I'm seeing on June 7th will run a preliminary full celiac panel.  It will only be 4 weeks by then.  Will it show something?  My sister has her PhD in immunology and I remember her saying how difficult research in immunology is because you need clearly high antibodies to demonstrate anything. 

When I was changing doctors due to insurance issues, I got one doc who I told I had celiac, and had been gluten-free for 2 years. He ordered a blood test and said I DID NOT have celiac cause the blood test came back negative....I looked at him like it was crazy, told him course your not going to detect the antibodies in test if I am not eating it. Told him to go back to med school and never went back. Similar experience with another doctor around that time....funny memory glad I found one that knows about the disease to some extent.

[Feeneyja]

Just saw the GI. He is going straight to endoscopy on Monday.  I will have been 4 weeks on my gluten challenge. He is confident that is long enough for endoscopy. He also said he prefers to NOT rely on the blood test first because too often you are not positive yet but the damage or inflammation shows on endoscopy. 

I have been feeling worse and worse.  Headache, dizzy, nauseous, burning feeling in throat and stomach, SO tired, gurgling stomach, gas, bloating, feels like there's a bowling ball in my stomach, mucus, constipation, my hair is falling out.  It just feels worse every day, by the weeks end I just need to rest and eat less gluten for a day.  Start to feel better, but then go right back to my gluten challenge the next day and am hit like a ton of bricks.  I sure hope I have eaten gluten long enough to show.  But would certainly be glad to be done with this self torture.

It really is a horrible thing: purposely inflict harm on oneself for a medical diagnosis. 

[Victoria1234]

1 hour ago, Feeneyja said:

Just saw the GI. He is going straight to endoscopy on Monday.  I will have been 4 weeks on my gluten challenge. He is confident that is long enough for endoscopy. He also said he prefers to NOT rely on the blood test first because too often you are not positive yet but the damage or inflammation shows on endoscopy. 

I have been feeling worse and worse.  Headache, dizzy, nauseous, burning feeling in throat and stomach, SO tired, gurgling stomach, gas, bloating, feels like there's a bowling ball in my stomach, mucus, constipation, my hair is falling out.  It just feels worse every day, by the weeks end I just need to rest and eat less gluten for a day.  Start to feel better, but then go right back to my gluten challenge the next day and am hit like a ton of bricks.  I sure hope I have eaten gluten long enough to show.  But would certainly be glad to be done with this self torture.

It really is a horrible thing: purposely inflict harm on oneself for a medical diagnosis. 

The countdown begins! Not too much longer. Keep us updated.

[Feeneyja]

  

The biopsies came back negative. 

 

No blood work was run, and with only a month long challenge, I doubt it would show anything anyway.  So I'm stuck in the land of NCGS with doctors recommending low Fodmap diets.  Of course the doctor doesn't hear when I say it's not a Fodmap issue. I eat a high Fodmap diet and never have any problems...unless it's gluten. And I did much of my challenge with vital wheat gluten, so it's not a starch issue.  And I have a daughter who has stomach and neurological symptoms but couldn't get a diagnosis after a 6 week challenge and a son I'm watching very closely because he has dental enamel problems and has had headaches and thrown up when consuming gluten. So what is all of this?  Hereditary Fodmap Syndrome?? 

 

We all went gluten free years ago for my daughter and none of us can be accurately tested. 

 

I was really done with the challenge, so I guess I have my answer. My hair started falling out, my gums are still red and swollen, bloat and constipation and mucus, dizziness and headaches and nausea.  Every day after the endoscopy When I went back to gluten free I have felt better.  

 

It's just frustrating. Maybe someday there will be a test that doesn't require you to poison yourself. 
 

[Ennis-TX]

WE always say celiac disease is one of the most most messed up when it comes to testing. Like you got to make yourself sicker and poision yourself to prove that it does.....like really. Put that logic to ANY other disease and you really see how messed up it is try it in your mind thinking of different diseases. illness, conditions of having to give your self something making it worse to prove you have it......

[Posterboy]

Feeneyja,

I think your doctor needs to read to be made aware that blood serology can be used to diagnose someone as a celiac.

New research indicates serology alone is within 3% accuracy of a "biopsy" diagnosis.

Here is the thread about it based on new research.

I still say you need to consider Pellagra as a differential diagnosis.

B-Vitamins are known to help Celiac's.

https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html

and Pellagra is shown to be co-morbid in 58% of Celiac's.

Here is my blog post about where I talk about how I was a Pellagrin who was diagnosed as a Celiac instead today and why this is possible.

celiac.com also ran an article about it.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

it doesn't mean it is!

But it should be considered when other disease's have been eliminated.

Taking Niacinamide 3/day for 3 to 4 months will be enough to see if you have sublicinical Pellagra and the doctor's don't know to diagnose it today.

You should also take B-complex to help balance your B-Vitamins.

I noticed in this thread that jmg commented that taking a B-complex has really helped him.

Other people on this board have had excellent results with taking B-vitamins.

Maybe it is time you considered a round to see if it might help your GI problems.

15+ years ago Prousky figured out/discovered that Niacinamide helps treat digestive problems but still this is relatively poorly understood research.

Open Original Shared Link

recently thankly mainly to ennis_tx tireless work on educationing people about the benefits of Magnesium more and more threads are occuring about it's benefits.

I think B-Vitamins also deserve that same attention.

I know they helped me.

*** this is not medical advice but my experience with taking B-Vitamins but I hope they help you in a similar manner.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

[Feeneyja]

Thank you Ennis and Posterboy.  

I feel very much frustrated right now as to what to do. Yes, gluten free. We were there already.  I am good at that one. We are actually grain and lactose free. When we went gluten free for my daughter, my history of anemia and headaches went away. No more hair falling out and loose stools. In fact I was feeling pretty great before my gluten challenge.  And my gluten challenge brought back all of the old symptoms that I never thought about.

I don't know posterboy. I didn't have a single issue while gluten free.  But now I have created a sick person for the sake of a diagnosis I didn't get. And there is no doctor for you if you are negative.  My GI Tract was NOT right during the challenge. The bloat is basically gone, and just today the nausea is better. But my BMs are still constipated and full of mucus. Why?  And the swelling and pain of my gums and mouth. It's getting better (at least now I feel like I can chew again).  What was that?  Do I have deficiencies?  Could B complex levels have gone down during this month?  What could have gone down during this month?  Just what happened and what do I treat?  

When I look at family history, my dad had no teeth by the time he married my mother. His enamel was bad and they basically rotted away. He had bladder cancer and died of pancreatic cancer. His sister died of liver cancer. His aunt died of liver cancer and another died of pernicious anemia.  Two of his siblings suffer from unexplained tremors. Cousins from those families have suffered from infertility.  Maybe none of it is connected. But I am not so sure. 

Ok, back to what to do next, prior to my gluten challenge I was taking vitamin D, calcium, and magnesium.  I know no one is a doctor here, but the doctor didn't help me. Do I just take a multi?  Do I go back to those supliments plus b complex?  I'm taking Hydro C to help with constipation. It contains Vit C, calcium, magnesium, and potassium.  

And my bones. I have had two stress fractures. One was my foot and it was around the time I was losing weight and and hair. The second one was a year into being gluten free. It was a rib. I got a bone scan and bone density for that one. Everything was normal. 

I just sent a message to my GP to see if he will order the serology. I will be a week gluten-free after endoscopy by then so maybe it's pointless?

 

[Ennis-TX]

Look up that Liquid Health company I mentioned might try their daily multiple along with the others I mention I use. The liquid supplments are much easier absorbed, no pills, and you can measure it out and experiment finding your balance.