Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

jassie

Negative Blood Test...

Recommended Posts

So I got my blood test back, and the results were "negative" but I did not get to see any numbers myself, so I don't know the details.

I think I'm going to try to go gluten-free as my next test, as I don't want to waste more time and money at the doctor anyways. But I want a more informed opinion than just my own on if my symptoms sounds like Celiac or not, because if I'm totally off base I think I should go back to the doctor for an ultra-sound or something.

I'm going to go through today as a sample, as it's been a pretty typical day for me. Any input will be greatly appreciated!

...

-- I woke up with my stomach feeling upset.

(Breakfast)

Coffee + Int. Delights creamer

Rice Crispies + Almond milk

-- No real change after eating, still not feeling up to par.

(At Morn. Meeting)

Yogurt Parfait w/berries and granola

-- As soon as I ate this I could tell it did not agree with me. I felt bloated, hiccuped constantly, and was extremely fatigued and tired, like the energy had been drained from me.

(Lunch)

Chinese Chicken Salad (Chicken, vinigrette, nuts, oranges, peppers)

Fruit Bowl

Soy Mocha

-- I felt so hungry before I ate that I ordered a big lunch, but I could barely finish it and started to feel sick while I was still eating. I was pretty sure there was no gluten in this meal, so does that mean that I'm reacting to something else? Or is it that my system could be damaged overall from gluten and needs time to recover?

After eating I felt cold, so I got a coffee... which made me feel much worse, again, like it had taken my strength from me :/ I felt very out of it, and my reflexes slowed/I got pretty clumsy.

(Dinner)

White Rice + Steamed Veggies

Nuts, Chocolate

-- Not as big of a reaction, but I still felt a bit nauseous while eating.

...

Overall, I just feel weak from not eating, and then I finally do eat, and I feel sick because I have eaten. I just want to feel better!

One of the reasons I believe I may be gluten intolerant is because of some Korean hot-paste that I have, it basically ground peppers mixed with wheat flour. Would a higher concentration of gluten produce a stronger reaction? Because as soon as I eat that stuff I feel like I need to lay down and rest, and my stomach balloons out to twice it's normal size.

...

Just one more question, what are some common foods/items that have gluten in them that are easily missed. Is it in most make-up? (Specifically Lancome) What about chocolates and candies? Lotions? Any tips would be amazing.

Thanks again you guys!

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Could it possibly be bloating and reaction from the peppers in the hot paste?

Or, quite possibly an intolerance to nuts???

Nothing you've eaten is jumping out at me as a gluten issue. You are experiencing feelings of nausea, but you aren't really eating anything that's gluteny.

Obviously, I'm not much help here. But if you said you'd had sandwiches, rolls, and a few cookies... I'd say, "well, yea... could be gluten." But you seem to be reacting to things other than gluten, since you aren't eating it. Nuts is the first thing that comes to my mind, since you are drinking almond milk and eating nuts. But, the bloating yuck feeling sounds just like me when I eat anything remotely spicy. That has nothing to do with Celiac. (in my case)


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

Share this post


Link to post
Share on other sites

Join eNewsletter

So I got my blood test back, and the results were "negative" but I did not get to see any numbers myself, so I don't know the details.

I think I'm going to try to go gluten-free as my next test, as I don't want to waste more time and money at the doctor anyways. But I want a more informed opinion than just my own on if my symptoms sounds like Celiac or not, because if I'm totally off base I think I should go back to the doctor for an ultra-sound or something.

I'm going to go through today as a sample, as it's been a pretty typical day for me. Any input will be greatly appreciated!

...

-- I woke up with my stomach feeling upset.

(Breakfast)

Coffee + Int. Delights creamer

Rice Crispies + Almond milk

-- No real change after eating, still not feeling up to par.

(At Morn. Meeting)

Yogurt Parfait w/berries and granola

-- As soon as I ate this I could tell it did not agree with me. I felt bloated, hiccuped constantly, and was extremely fatigued and tired, like the energy had been drained from me.

(Lunch)

Chinese Chicken Salad (Chicken, vinigrette, nuts, oranges, peppers)

Fruit Bowl

Soy Mocha

-- I felt so hungry before I ate that I ordered a big lunch, but I could barely finish it and started to feel sick while I was still eating. I was pretty sure there was no gluten in this meal, so does that mean that I'm reacting to something else? Or is it that my system could be damaged overall from gluten and needs time to recover?

After eating I felt cold, so I got a coffee... which made me feel much worse, again, like it had taken my strength from me :/ I felt very out of it, and my reflexes slowed/I got pretty clumsy.

(Dinner)

White Rice + Steamed Veggies

Nuts, Chocolate

-- Not as big of a reaction, but I still felt a bit nauseous while eating.

...

Overall, I just feel weak from not eating, and then I finally do eat, and I feel sick because I have eaten. I just want to feel better!

One of the reasons I believe I may be gluten intolerant is because of some Korean hot-paste that I have, it basically ground peppers mixed with wheat flour. Would a higher concentration of gluten produce a stronger reaction? Because as soon as I eat that stuff I feel like I need to lay down and rest, and my stomach balloons out to twice it's normal size.

...

Just one more question, what are some common foods/items that have gluten in them that are easily missed. Is it in most make-up? (Specifically Lancome) What about chocolates and candies? Lotions? Any tips would be amazing.

Thanks again you guys!

Here's a short answer:

Rice Krispies have gluten (in the malt flavoring I believe) and are a no-no.

Granola almost certainly has gluten (oats usually have gluten- that's the quick answer. The full answer is longer.)

Chinese Chicken Salad is suspect, as most soy sauce and many Chinese sauces have gluten.

Some people also react to soy. Many, many of us react to dairy, at least in the first six-months to a year.

Many mainstream cosmetics (lancome, Clinique) have lots of gluten. Every single item needs to be checked, probably by calling the manufacturer or checking their website.

Chocolates and candy are suspect. Snickers, M&Ms, Reese's (except fun size and holiday shapes) are examples of OK candy. Kit Kat, Hershey's Crunch Bar and others are suspect.

Regarding the hot chili paste, if you have that reaction - don't eat it.

Good luck! Hopefully someone else will post the link to safe and unsafe foods. I'm so tired I need to go to bed!


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

Share this post


Link to post
Share on other sites

Join eNewsletter

Thanks for the input!

I had always thought nut allergies were more of a violent reaction, like hives and anaphylatic shock? I could be wrong though.

I've had some problems with vague symptoms throughout my life: fatigue, weakness, unexplained fluctuations in weight. I've been tested for Diabetes and anemia over and over...

But recently I just know that there is something not right with my stomach. At first I thought I was just lactose intolerant -- but cutting out dairy did not solve my problem. I've had problems with bloating, gas, and whenever I eat I feel like I'm not getting the right nutrients from the food. My fatigue has gotten so bad that there are times when I can barely do my job. Recently my stomach has felt like something was almost cooking inside it, not because it was hot, but because it was so upset and gurgly from eating.

So since I have had my blood test already, I am trying to cut out gluten now, but I'm sure I must be missing things. I don't think I have gone a day totally gluten-free. I think I need to go grocery shopping today so I can have something other than rice.

Share this post


Link to post
Share on other sites

Join eNewsletter

HI there and welcome to the board!

In the beginning of Jan I had basically that same problem (well, actually for a lot longer, but it really came to it's worst in Jan)... EVERYTHING I ate made my stomach hurt terribly. I even got to the point where I really didn't want to eat because I knew I'd feel sick after. I'd be sooo hungry, and then I'd eat and I'd rather have been hungry again.

I also cannot handle gluten. I went to the DR and my blood work came back neg. But, I don't eat it because I know what it did to me and how it made me feel for so long.

So for a few weeks, I pretty much ate bland foods. Rice was always good for me, and I ate my fair share of bananas then, too. They really seemed to comfort my stomach. I avoided dairy like the plague, tomato based sauces, and things like that. I also avoided coffee for a while, which was a hard one. And spicy food is not such a good idea either.

And as I gradually felt better, I would try something new. And now, I can eat most of the things I used to. And I can also figure out much more quickly what bothers me. Like the other morning, I had an apple for breakfast... OUCH! The stomach pains returned and hung out for a few hours. So, no apples on an empty stomach for me. Lesson learned. But a few months ago, my stomach was in such constant agony that I would never have been able to figure it out.

Do you by chance work retail? Just curious... the eating out of retail is difficult to maintain a sense of well being. I did it for six years... the last year or so (which is when I think all this started) were terrible for me.

So I would advise you to find your safe foods, and stick with those for a week or so until your stomach starts calming down. When you can eat without feeling terrible, gradually try to reintroduce some things.

Hope that helps a little!!!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

Share this post


Link to post
Share on other sites

Join eNewsletter

Thanks for the input!

I had always thought nut allergies were more of a violent reaction, like hives and anaphylatic shock? I could be wrong though.

Not necessarily. In some, there is a tolerance buildup that starts with GI symptoms. Intolerance, not allergy.

However, yea... rice krispies (brand name) are not gluten free. I wasn't sure about the chicken salad, I've had chinese chicken salad that had NO soy sauce, so I missed that one.

Whatever it is... I hope you are able to pinpoint it - quickly!


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

Share this post


Link to post
Share on other sites

Join eNewsletter

You've had some good advice here. I had a similar experience. Negative blood test. Reacting to everything. The problem for me was that I wasn't paying enough attention to hidden gluten and was constantly glutening myself. I went for a very bland diet until my gut settled, no gluten (paying attention this time), no dairy. I was still reacting daily until I discovered that I also have a sensitivity to carrageenan which is in alot of things ie: soy milk, rice milk, almond milk, commercial icecream (esp. the cheaper stuff) and sourcream. I read my labels very carefully now and things are starting to settle down.

Good luck.

Share this post


Link to post
Share on other sites

Join eNewsletter

Ah thanks again you guys! Your advice means a lot to me.

I do work retail, but I pretty much only eat out at the Nordstrom Cafe, which has really good, fresh, foods IMO. The Chinese salad I usually have uses a ginger-sesame vinigrette sauce, but I have never seen the ingredient list. I hope it's safe to eat, because I absolutely LOVE it.

I'm going to do my best to control my cravings for more savory foods and stick with rice-y things for now! Time for dinner...

Share this post


Link to post
Share on other sites

Join eNewsletter

What jumps out at me when I read what you ate is the similarity to my (unsuccessful) diet a"nd the presence of dairy with the milk protein casein being a possible problem. From what I have read and experienced, people with gluten sensitivity may also have a sensitivity to milk proteins as well as milk sugars. (Oh and yes, Rice Krispies contain barley malt...which is a no, no. Many soy sauces contain wheat starch!! So if you eat out you can't tell with dressings if they contain wheat starch and many of them will.) Bring your own dressing and buy soy that is made without the wheat starch.)

I would have to agree with lizard00: "So for a few weeks, I pretty much ate bland foods. Rice was always good for me, and I ate my fair share of bananas then, too. They really seemed to comfort my stomach. I avoided dairy like the plague, tomato based sauces, and things like that. I also avoided coffee for a while, which was a hard one. And spicy food is not such a good idea either."

This, naturally really stinks b/c we can't even have "non-dairy" creamers b/c they contain the offending protein casein.

That said, I am still not well and have read a blog on this site that mentions a more complete approach to Celiac diet discussed in a book "Reversing the Vicious Cycle of Celiac Disase" in which there is an issue with carbohydrates in the diet. I hate to admit it, but with all the restrictions, I have tended to treat myself with more sweets and the logic of what is discussed leads me to focus on this new suspect.

I do disagree with people who believe nuts are the problem: most people with gluten sensitivity do not have a problem with nuts, seeds or legumes.

If you haven't seen: https://www.celiac.com/blogs/39/Laundry-Lis...the-Starch.html

and https://www.celiac.com/blogs/40/Its-the-Dairy-Harry.html

this woman seems really knowledgeable. I am still struggling with this and am waiting for my blood test results which I bet you anything, will be negative....!

Share this post


Link to post
Share on other sites

Join eNewsletter

I do disagree with people who believe nuts are the problem: most people with gluten sensitivity do not have a problem with nuts, seeds or legumes.

I wasn't trying to make a correlation between Celiac and nut intolerance/allergies. I have a Celiac child who is allergic (flat out) to peanuts and all tree nuts, and can't tolerate ANY legumes. I've never thought her to be an "odd case" based on things I've read here, however.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

Share this post


Link to post
Share on other sites

Join eNewsletter

almost all grilled chicken in a restaurant has a grill base applied to it & the grill base almost always contains gluten. Actually, I have never found one that did not. they put it on there because it makes the meat "taste good".

re the person with an apple issue, that might be one thing that you need to check into getting the organic ones...

Share this post


Link to post
Share on other sites

Join eNewsletter

I wasn't trying to make a correlation between Celiac and nut intolerance/allergies. I have a Celiac child who is allergic (flat out) to peanuts and all tree nuts, and can't tolerate ANY legumes. I've never thought her to be an "odd case" based on things I've read here, however.

You may be right on that as well. I also have migraines which seem to be connected to the protein tyramine... that eliminates aged foods from my diet as well. My thinking now is that my small intestine is so compromised, that I must go through an extended period of a very simple and pure diet of fresh fruit, vegetables, meats and fish and eliminate sugars and other carbohydrates in addition to gluten, casein and tyramine proteins. It is my hope that after I repair myself that I may be able to introduce more foods that I sorely miss.

So sorry about your youngster - it is hard enough for an adult to sacrifice eating all the wonderful foods people have created; it must be really tough for you and your little one.

Share this post


Link to post
Share on other sites

Join eNewsletter

A long time a go there was someone with lots of bloating problems and after a while we thought it had to do with yeast sensitivity. This would mean anything fermented and yest and mushrooms and vinegar and mold in houses. There is even an abstract on pubmed.com about yeast causing the same reactions in the gut as gluten, and it is in The Lancet....

(I have IgG antibodies to yeast)

Could be vinegar too.

And, all soyauce is made from part wheat , unless it is a wheat-free kind. Look it up on wikipedia. And, it is of course fermented.

Other things fermented are chocolate and some more things. gluten-free bread usually have yeast too (for the taste) . I bake it without the yeast.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter