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Losing Hope...


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#1 kswan08

 
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Posted 24 July 2012 - 04:35 PM

I have had the blood test done for Celiac but it was negative. I've been eating gluten-free and lactose-free for 3 weeks. The terrible pain in abdomen is gone but the bloating remains and I am continuing to gain weight while eating very little! I'm truly shocked by the weight gain and more than a little concerned. My doctor has done nothing other than tell me to take Prilosec and Align (probiotics). She didn't even suggest I go gluten-free (she told me it was just the latest fad!). I'm having a colonoscopy on August 16th but nothing else is scheduled.
I've had IBS on and off for years - since I was a teenager really (now 50). I have had hypoglycemia which no one can explain. I have had pneumonia 3 times in 4 years (finally got a pneumo-vax) and feel tired all the time. Last year I had an emergency appendectomy. Now I can't eat without feeling sick. I'm discouraged and frustrated and don't know who to talk to.
I need some help and don't know where to turn.
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#2 eatmeat4good

 
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Posted 24 July 2012 - 05:03 PM

Welcome Kswan08,

You are right to be concerned about the weight gain. Have you had your thyroid checked? Hashimoto's can cause weight gain. TSH level doesn't always show if you have Hashimoto's. You should ask for a full thyroid panel including tests for Hashimoto's and Graves antibodies.

Having a negative test result does not mean that you are not Celiac. The tests are not 100% accurate. In fact there is something like 30% of false negatives. It seems clear from your elimination experience that you are on the right track here. There may be other things going on too, like Hashimoto's or something else medical. But when you test negative, the next thing to do is to go completely gluten free for at least 3 months. You are feeling better after just 3 weeks so you know you are on to something.

What are you eating? If you tell us what you eat, it might help. If you eat a lot of gluten free processed foods or carbohydrates you may have to watch that. They can cause weight gain.

I hate to hear that yet another Dr. thinks Celiac is a fad. It isn't. I was sick for many years too. At my sickest I had gained weight to 200 lbs and I'm only 5 ft tall. It completely resolved but it took 6 months or so before my body started dropping weight. The weight gain was completely out of control and I wasn't even able to eat. I think it's malnutrition and malabsorption. It takes a while to heal. What you can do for yourself is ask your Dr. to test your thyroid and ask for your vitamin levels to be checked. You need vitamin supplements and eat mostly whole foods like meat, vegetables, fruits, and nuts. Limit carbohydrates. It took nearly a year for my metabolism to completely stabilize. Don't worry about whether it's called Celiac or Gluten Sensitivity...the thing is gluten clearly seems to be a problem.

And watch for cross contamination because that can keep the inflammation going even when you think you are gluten free. Hope you feel better soon.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#3 IrishHeart

 
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Posted 24 July 2012 - 05:48 PM

You could very well have celiac and have a negative blood test.

the "latest fad"?? oh for pete's sake!!!!...what an irresponsible and stupid thing to say.

"IBS" means an "irritable bowel"...but is not a diagnosis, just a syndrome.

WHY is that bowel irritable...is the question!

Hon, you are 3 weeks gluten and lactose -free and seeing some relief.....what does this tell you?

yes, you probably have a gluten and lactose problem.

It takes longer than a few weeks for recovery, however.

A colonoscopy looks for problems in the LARGE intestine. It is not going to tell you if you are a celiac. That requires a small intestinal biopsy.

And for a diagnosis of celiac, you will have to be ingesting gluten.

I had "IBS" too--for MANY years....what hogwash. I do not have it now that I am post DX and gluten free for 18 months.
  • 2

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 justlisa

 
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Posted 24 July 2012 - 05:56 PM

What are you eating?

Where are you eating?

How vigilant are you being?

Vitamin deficiencies?

Have you checked your medications for gluten?

Have you tested your thyroid?

The list of questions (as I've been learning) goes on...
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#5 MitziG

 
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Posted 25 July 2012 - 06:09 AM

Definitely get the thyroid checked.

Don't give up on gluten free...any improvement shows it is a problem for you, whether you are celiac or not.

Instead of just being lactose free, try removing all casein (milk protein) for awhile. A lot of us are sensitive to it.

Be patient. This problem didn't happen overnight and it can take months before some of us noticed real improvement.
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#6 GFinDC

 
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Posted 25 July 2012 - 07:31 AM

Definitely get the thyroid checked.

Don't give up on gluten free...any improvement shows it is a problem for you, whether you are celiac or not.

Instead of just being lactose free, try removing all casein (milk protein) for awhile. A lot of us are sensitive to it.

Be patient. This problem didn't happen overnight and it can take months before some of us noticed real improvement.


An endoscopy is used to take biopsy samples for testing celiac. They check the samples for blunting of the villi that line the small intestine. It is good to get multiple sample for different areas, I have seen 5 or more reccomended. When testing for celiac it helps to go to a doctor who is familiar with diagnosing it. Not all of them are.

You do need to keep eating gluten until the testing is complete to get accurate (?) results. They usually can do an an endoscopy at the same time as a colonoscopy. You can check the doctors section of the forum to see if you can find one in your area that is good. Or maybe check with the CSA (Celiac Sprue Association) chapter for your area.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 beachbirdie

 
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Posted 25 July 2012 - 07:48 AM

I have had the blood test done for Celiac but it was negative. I've been eating gluten-free and lactose-free for 3 weeks. The terrible pain in abdomen is gone but the bloating remains and I am continuing to gain weight while eating very little! I'm truly shocked by the weight gain and more than a little concerned. My doctor has done nothing other than tell me to take Prilosec and Align (probiotics). She didn't even suggest I go gluten-free (she told me it was just the latest fad!). I'm having a colonoscopy on August 16th but nothing else is scheduled.
I've had IBS on and off for years - since I was a teenager really (now 50). I have had hypoglycemia which no one can explain. I have had pneumonia 3 times in 4 years (finally got a pneumo-vax) and feel tired all the time. Last year I had an emergency appendectomy. Now I can't eat without feeling sick. I'm discouraged and frustrated and don't know who to talk to.
I need some help and don't know where to turn.


Which celiac tests did they do? Do you have the actual numbers? They may not have done a full array of tests for celiac.

They should test you for immune deficiency. It's common for people with certain immune deficiencies to contract some pneumonias.

Thyroid? They should do TSH, Free T3 and Free T4.
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#8 bartfull

 
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Posted 25 July 2012 - 08:06 AM

Kswan, What they said.

I have sent you an email through this site. As a brand new member you can't get PMs yet, but please check your email. Because your computer doesn't recognize me it may go into your junk file so maybe if you don't see it on your regular email, you can find it in mixed in with the other "junk". :)
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#9 TiaMichi2

 
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Posted 25 July 2012 - 08:17 AM

Which celiac tests did they do? Do you have the actual numbers? They may not have done a full array of tests for celiac.

They should test you for immune deficiency. It's common for people with certain immune deficiencies to contract some pneumonias.

Thyroid? They should do TSH, Free T3 and Free T4.

Celiac is not a fad, maybe you need to find a new Doctor.

If you are feeling better just going off gluten for this short of time, that tells you something, keep off of it.

For me it was not until I eliminated, lactose, soy and corn and xanthan gum from my diet that I felt a lot better. I had the weight gain also, everyone thought that I was pregnant, my stomach was so destended. Once I eliminated the lactose, my tummy shrunk right away, and I did not feel as bloated. I also do not eat red meat, unless I can verify that it has no added solution injected to it, had a couple of bad expiriences with pot roasts, when I checked, found out that they added injected a "solution" to keep the meat looking pink, and it contained a wheat derivative. I have also decided to stop the gluten-free breads.

I try not to eat anything processed, except for the cereal in the am. which is rice and certified gluten-free. I can not handle gluten-free oats at all.

I sanitized my kitchen, got rid of all my old glutenned utensils,gadgets and put "the hubs" on a gluten-free diet right a long with me, which he loves by the way, and he feels he has a lot more energey and has last some weight, he is not gluten sensitive, he just did it because he loves me, and as an athelete, he knows how beneficial it can be to be off gluten.

Be aware of CC (cross contamination)that can get you at times. I also cleaned out my toiletries, lipsticks and makeup, and oral care. Everything I had contained something derived from wheat, so out it went.

It took me 3 years to figure all this out, it was trial and error for me, so hang in there. :)

-Miriam
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#10 kswan08

 
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Posted 25 July 2012 - 11:46 AM

Welcome Kswan08,

You are right to be concerned about the weight gain. Have you had your thyroid checked? Hashimoto's can cause weight gain. TSH level doesn't always show if you have Hashimoto's. You should ask for a full thyroid panel including tests for Hashimoto's and Graves antibodies.

Having a negative test result does not mean that you are not Celiac. The tests are not 100% accurate. In fact there is something like 30% of false negatives. It seems clear from your elimination experience that you are on the right track here. There may be other things going on too, like Hashimoto's or something else medical. But when you test negative, the next thing to do is to go completely gluten free for at least 3 months. You are feeling better after just 3 weeks so you know you are on to something.

What are you eating? If you tell us what you eat, it might help. If you eat a lot of gluten free processed foods or carbohydrates you may have to watch that. They can cause weight gain.

I hate to hear that yet another Dr. thinks Celiac is a fad. It isn't. I was sick for many years too. At my sickest I had gained weight to 200 lbs and I'm only 5 ft tall. It completely resolved but it took 6 months or so before my body started dropping weight. The weight gain was completely out of control and I wasn't even able to eat. I think it's malnutrition and malabsorption. It takes a while to heal. What you can do for yourself is ask your Dr. to test your thyroid and ask for your vitamin levels to be checked. You need vitamin supplements and eat mostly whole foods like meat, vegetables, fruits, and nuts. Limit carbohydrates. It took nearly a year for my metabolism to completely stabilize. Don't worry about whether it's called Celiac or Gluten Sensitivity...the thing is gluten clearly seems to be a problem.

And watch for cross contamination because that can keep the inflammation going even when you think you are gluten free. Hope you feel better soon.


I did some online research last night and have decided to change doctors. I walked into the new practice today to register and was allowed to talk with the nurse practitioner just to get reassurance about the practice, the expertise and their referral policies. I won't see this new doc until after I have had the colonoscopy - mainly b/c it's already scheduled and I hate to lose my spot. I am thinking I should have an endoscopy too since I've learned that that is the only true way to be diagnosed with Celiac (is this true?).

I am allergic to fresh fruit. If I eat a lot of veggies I get sick fairly quickly (goes through me in a flash). I can't eat salad at all anymore b/c I can't keep it in me. I have been eating organic chicken (grilled), organic hamburgers (gluten-free), organic eggs and sorbet. I had some quinoa with mushrooms a few times. I haven't been eating much b/c it hurts when I eat. I HAVE eaten "processed gluten free" bread (Udi's), some gluten-free cupcakes my daughter made for me (Betty Crocker gluten free mix) and tried a gluten-free cookie (yuck). I went to the natural foods store near me and they tried to sell me nearly everything in the store. It's really expensive to shop gluten-free, especially when I get sick so much.
I feel like limiting carbs leaves me almost nothing to eat because of the food allergies to fruit and my body's response to frequent veggies. I can continue with chicken but the red meat doesnt sit well either.

It helps to know that weight gain is not news to you. I have gotten really discouraged that I am gaining weight while eating very little (and pooping a lot...sorry :-/ But if I am not digesting and absorbing properly then weight gain/loss to an extreme makes sense.
I don't know what Hashimoto's is but I'm going to google it!
What tests do I request in order to have all my vitamin levels checked?

Thank you!!

You could very well have celiac and have a negative blood test.

"IBS" means an irritable bowel...but is not a diagnosis, just a syndrome.

Hon, you are 3 weeks gluten and lactose -free and seeing some relief.....what does this tell you?

yes, you probably have a gluten and lactose problem.

It takes longer than a few weeks for recovery, however.

A colonoscopy looks for problems in the LARGE intestine. It is not going to tell you if you are a celiac. That requires a small intestinal biopsy.

And for a diagnosis of celiac, you will have to be ingesting gluten.


I think if I eat any gluten right now, I will end up in the hospital. I think I was headed that way when I finally cut it out of my diet (along with lactose). I probably need to have the endoscopy but am afraid to go back on the gluten.

Definitely get the thyroid checked.

Don't give up on gluten free...any improvement shows it is a problem for you, whether you are celiac or not.

Instead of just being lactose free, try removing all casein (milk protein) for awhile. A lot of us are sensitive to it.

Be patient. This problem didn't happen overnight and it can take months before some of us noticed real improvement.


Casein? Hmm...I didn't think about that because I was told it was very rare. I saw a book that talked about food that were both gluten-free and casein free. Do you think I should ask to be referred to a gastro doc or just let my primary continue?

How would I know if a food has casein...is it labeled?

Thanks!

An endoscopy is used to take biopsy samples for testing celiac. They check the samples for blunting of the villi that line the small intestine. It is good to get multiple sample for different areas, I have seen 5 or more reccomended. When testing for celiac it helps to go to a doctor who is familiar with diagnosing it. Not all of them are.

You do need to keep eating gluten until the testing is complete to get accurate (?) results. They usually can do an an endoscopy at the same time as a colonoscopy. You can check the doctors section of the forum to see if you can find one in your area that is good. Or maybe check with the CSA (Celiac Sprue Association) chapter for your area.


Great idea to see if there is a doctor recommended here to do the colonoscopy and endoscopy at the same time! Thank you!
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#11 ShannonA

 
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Posted 25 July 2012 - 11:47 AM

Celiac is not a fad, maybe you need to find a new Doctor.

If you are feeling better just going off gluten for this short of time, that tells you something, keep off of it.

For me it was not until I eliminated, lactose, soy and corn and xanthan gum from my diet that I felt a lot better. I had the weight gain also, everyone thought that I was pregnant, my stomach was so destended. Once I eliminated the lactose, my tummy shrunk right
away, and I did not feel as bloated. I also do not eat red meat, unless I can verify that it has no added solution injected to it, had a couple of bad expiriences with pot roasts, when I checked, found out that they added injected a "solution" to keep the meat looking pink, and it contained a wheat derivative. I have also decided to stop the gluten-free breads.

I try not to eat anything processed, except for the cereal in the am. which is rice and certified gluten-free. I can not handle gluten-free
oats at all.

I sanitized my kitchen, got rid of all my old glutenned utensils,gadgets and put "the hubs" on a gluten-free diet right a long with me, which he loves by the way, and he feels he has a lot more energey and has last some weight, he is not gluten sensitive, he just did it because he loves me, and as an athelete, he knows how beneficial it can be to be
off gluten.

Be aware of CC (cross
contamination)that can get you at times. I also cleaned out my toiletries, lipsticks and makeup, and oral care. Everything I had contained something derived from wheat, so out it went.

It took me 3 years to figure all this out, it was trial and error for me, so hang in there. :)

-Miriam

Why xanthan gum? What is it made from?
  • 0

#12 kswan08

 
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Posted 25 July 2012 - 11:51 AM

Which celiac tests did they do? Do you have the actual numbers? They may not have done a full array of tests for celiac.

They should test you for immune deficiency. It's common for people with certain immune deficiencies to contract some pneumonias.

Thyroid? They should do TSH, Free T3 and Free T4.



I'm writing all of this down and will be contacting my PCP for the info. I doubt that I have had any tests for immune deficiency since the doc didn't take me seriously in the first place. I have no idea what "celiac screening" blood work she did, but I will be asking now that I know what the questions are! Thank you.

Why xanthan gum? What is it made from?



I have so much to learn. I need to look at make up, meds, everything! I am almost positive that I am soy sensitive along with lactose. But I hadn't thought about all the other things.

It's hard to know what to look for when you feel like an island, ya know?
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#13 bartfull

 
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Posted 25 July 2012 - 12:34 PM

Xanthan gum is actually a mold that is grown on corn. It is used to make gluten-free flours sticky enough to hold together when baked.
  • 1

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#14 IrishHeart

 
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Posted 25 July 2012 - 12:57 PM

I think if I eat any gluten right now, I will end up in the hospital. I think I was headed that way when I finally cut it out of my diet (along with lactose). I probably need to have the endoscopy but am afraid to go back on the gluten.



I can relate to that! A gluten challenge would kill me for sure.

In that case, then you may not get a "proper" celiac DX...but if that does not matter to you, then go gluten-free and don't look back!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 ciamarie

 
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Posted 25 July 2012 - 02:21 PM

I also do not eat red meat, unless I can verify that it has no added solution injected to it, had a couple of bad expiriences with pot roasts, when I checked, found out that they added injected a "solution" to keep the meat looking pink, and it contained a wheat derivative.

Hey Miriam, and all --

I wanted to add to this, since I'd been reacting to beef myself. I'm curious how you found out they'd injected a solution? Did you ask at the grocery store?

I've recently found out that when it comes to beef and USDA regs, if it is labeled 'natural' then it can't have any additives. After I found that info., I tried some beef from a local store that is labeled natural (Painted Hills brand), and I was fine with it. It's now a regular part of my diet, had some last night in fact. A couple of weeks ago I was looking for the natural ground beef, and spoke to a woman that was putting meat into the display case. She told me it was the ground beef with the (blue I think?) label, it was the only natural ground beef they carry. When I went yesterday, I noticed they've added the Painted Hills logo to the shelf under where they put those packages of ground beef.

I'm not even sure about getting 'grass fed' beef or organic, if it's not labeled natural, too. And the only organic they have there is frozen, and costs twice the price per pound!
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