Blood test showed wheat allergy/intolerance, Where do I start
#345272 - 04/29/09 03:45 PM
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mrae
Reged: 02/05/09
Posts: 481
Loc: California
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I went to the gi doc today and my blood test came back that I have a wheat allergy/ intolerance. So he told me to eat wheat/gluten free for a month and see if that helps my diarrhea and urgency. I have no idea where to start. What to eat what not to eat where I get the food. Please anybody that knows anything about this issue any suggestions would be very much appreciated. I need to get started asap.
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Was it the blood test for Celiac Disease?
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IBS-C
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Yes it was. He wanted me to try eating this way for about a month and then if it doesn't improve things he will do a biopsy on my intestines.
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My RAST test also showed me allergic to wheat - not celiac sprue, though. My "gut" reaction isn't diarrhea - usually the opposite and a lot of swelling and eventually yeast/candida.
You have to read, read, read, ingredients in everything - even Cheerios have wheat flour in them, can you believe? Check out Ezekiel bread and go to the HFS for help on some gluten/wheat free "bread" mixes they have. I have a friend who swears by something that's called "Cheebees"???? It's a mix that you make into bread/rolls, etc. Wheat can be hidden in so many things. Search/google the internet. My daughter's friend has celiac so bad, she's now writing a book on eating wheat free. She gets sick if she eats a salad that someone put a crouton on and removed it. Almost like a peanut allergy.
It's not easy, but you can do it. I try, then slide back, but my symptoms aren't as severe as yours.
Sending prayers for this to work and be the answer for you without having to be biopsied..
{{Hugs}} - Dorothy
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"I Will Survive! :-)... I shall live and not die and declare the works of The Lord..."
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Your doctor is actually misinformed, which most GI doctors are. If your blood test was positive for Celiac, you need a biopsy to confirm the diagnosis before you begin a gluten free diet. The reason is that your villi begin to heal as soon as you start the diet - in a month, they may not show much damage, and your doctor will tell you that you don't have Celiac. This will lead to more confusion on your part!
It's your decision - you can go gluten free now and forget about the biopsy, or you can wait and push to have the biopsy done first. The diet alone may make you feel well enough that that may be answer enough for you. Only you can decide how important diagnosis is.
See www.celiac.com for more information and some good informative links.
Do NOT eat the Ezekiel bread if you've had a positive test for Celiac. Many who are intolerant to wheat are able to eat it, but it contains wheat, barley and rye, all of which are TOXIC if you have Celiac Disease.
Go to a good health food store if you have one in your area. Wegmans is good too, if you live near one of those. You will be able to find lots of gluten free replacements for foods - some are good, some are awful.
I followed the diet for a long time after my doctor told me too (no testing though). I recommend the Nature's Path and Envirokidz cereals - they will be labeled on the front if the are gf. Tinkyada rice pasta is ok, and I used to eat a lot of brown rice. The nice thing is that these foods are all easy to digest too.
Let us know if you have any more questions! Good luck!
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IBS-C
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I am waiting to find out if I'm in the same boat... I went to a new GI doc and when I told her I had positive bloodwork for celiac back in the day, but a negative biopsy, she repeated the bloodwork. I'm waiting to hear and will not be happy if she wants me to go gluten free...or even just wheat free...
So I will certainly let you know if we're in the same boat!!
Hang in there! I ate a year of a gluten free diet and it's easier now than it was then. All HFS have entire gluten free sections.
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IBS-A
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That is where I am headed today, the hfs. I will start there to get me started until I learn more about it. That way I am guaranteed gluten free products. Yes let me know if you have to do the diet again. That way we can help each other out. Hopefully you won't have to.
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Well from what he said if the gluten free diet works we are not going to do the biopsy. Which I am actually nervous getting done. If it doesn't help then from what I understand he was doing the biopsy to find something else wrong not celiac. Thank you so much for all your info and advice 
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GaGa thanks so much for your encouragment. I will do my best to stay positive and move forward with this. I am determined to do it to the T for the next month so we will know for sure if this is what is causing my symptoms.
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Aly
#345300 - 04/30/09 07:47 AM
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Jordy
Reged: 08/12/06
Posts: 2095
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I didn't think you felt any better going GF. In fact, I thought you felt worse?
I hope your tests come back negative.
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IBS-C with pain and bloat
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All GI doctors tell you not to eat GF until after the biopsy. If you eat GF for a month before the biopsy, it gives your body time to heal and the biopsy is useless. Please consult another GI about this! It is extremely important if you want a definite answer.
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IBS-C with pain and bloat
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If this gluten free works we won't be doing a biopsy. If it doesn't work we will be doing a biopsy and looking for something other than Celiac.
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The blood test for celiacs is not a conclusive test - only the biopsy is a conclusive test. If you read the test and diagnostics section on the Mayo Clinic website on celiac disease you see it says the following:
Quote:
A blood test can now detect high levels of these antibodies and is used to initially detect people who are most likely to have the disease and who may need further testing. To confirm the diagnosis, your doctor may need to microscopically examine a small portion of intestinal tissue to check for damage to the villi. To do this, your doctor inserts a thin, flexible tube (endoscope) through your mouth, esophagus and stomach into your small intestine and takes a sample of intestinal tissue.
A trial of a gluten-free diet also can confirm a diagnosis, but it's important that you not start such a diet before seeking a medical evaluation. Doing so may change the results of blood tests and biopsies so that they appear to be normal.
If you have celiac and you remove gluten from your diet you will have to re-introduce it before a biopsy can be done because you intestine may have partially healed removing evidence on intestinal damage done by gluten.
You might check back with your GI doctor and confirm that you don't need a biopsy before you start the gluten free diet. If the biopsy shows you don't have celiac disease because the blood test gave a false positive result then you may be wasting your time trying a gluten free diet.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Just wanted to throw my 2 cents in here...
Also, keep in mind you can still have IBS & Celiac... so, eating a gluten free diet might not help, but by the time you have the biopsy, your villi could be healed... so even if you think it's not helping, it could just be IBS and the celiac could have been healed from a GF diet. This is confusing, I understand... but wanted you to think about it from that angle. If you have a biopsy that is positive, you'll have SUCH peace knowing that you do in fact have celiac. With the bloodwork, you'll never really know...
Aly
p.s. I put my email in the other post to me!
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IBS-A
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I agree. IMO it is worth seeing how you do not eating gluten. If your symptoms go away then why do you need an official diagnosis of celiacs? For me, if the symptoms returned off gluten I would go back to eating it and get the biopsy. If no symptoms I would say I was GI.
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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That is what I have decided to do. I am going to go ahead and eat gluten free and if it doesn't help we will go from there with the biopsy after I reintroduce gluten into my diet. Thank you for your opionion on this.
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Evidently, according to the other posts, I'm not very knowledgeable... sorry! 
I guess, I'm a chicken when it comes to invasive tests and know several with celiac sprue who got better just on the diet w/o any biopsies.... But, only you know best. I would never intentionally steer someone in the wrong direction.
Blessings! Dorothy
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"I Will Survive! :-)... I shall live and not die and declare the works of The Lord..."
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I agree with you, I would rather try a diet first and possibly not have the biopsy. I am tired of all the different test and so is my wallet. Trying it through food first makes more sense to me but that is me, I also understand other people who would rather have both test showing there issue. But for now I am sticking with the diet and if in the future need the biopsy then I will deal with that when it comes.
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This is for anyone out there who is wheat intolerant. I too am wheat intolerant and eat a lot of gluten free foods as well. It has taken me a few years to figure out what exactly I can tolerate and I can't tolerate. Although it differs for every person.
But, please feel free to send me a message through this site. I am always willing to help anyone find foods and figure out what to buy!!
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Can you post what you usually eat in a day and what you can't eat. Is your only issue wheat intolerance or are you ibs to? If you eat wheat what are your symptoms?
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mrae:
I do have IBS as well as wheat intolerance and as you know lactose intolerance too. Although, I can tolerate fat free organic yogurt. But here is a list of some foods that I eat on a daily basis:
Breakfast:
fat free Stonyfield Farms organic yogurt
cereal: Puffins, Natures Path corn flakes or mesa sunrise cereals
banana
wheat free rye bread from Food For Life
Simply Orange orange juice
some mornings I also eat Van's wheat/dairy free waffles (delicious!)
Lunch:
banana or cooked vegetables
a piece of wheat/dairy free zucchini or pumpkin bread ( I am lucky enough to have a local natural foods store that bakes these, but I know there are recipes on here to make them too!)
somedays I drink Odwalla Soy Milk protein drinks
Dinner: many options
rice pasta with marinara sauce
marinara sauce is either Amy's Marinara or Newman's Own Marinara
cooked vegetables
canned peaches, pears or fresh mango
spelt bread (I know it is a branch of wheat but I can tolerate it)
Amy's Baked Ziti Bowl-gluten and dairy free
Amy's rice crust and soy cheese pizza-gluten/dairy free
Health Valley vegetable soups or chicken w/rice soups
Imagine tomato soup
I also eat Ezekiel rolls which use sprouted grains that I can tolerate
For meat I eat Ian's gluten/dairy free fish sticks and chicken nuggets
I also make wraps using rice tortillas and Applegate Farms' deli meat, I chop up roma tomatoes to put in the wrap
( I eat mostly organic, can you tell?)
cooked vegetables include corn, peas, sweet potatoes, peas, carrots, cauliflower, broccoli and zucchini
I drink Silk Soymilk with meals and lots of water throughout the day.
I put honey, organic jams and Soy Garden "buttery" spread on my breads and waffles
I hope this helps you! If you need anything else please ask. I know it seems daunting but I know you will find your way!
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Re: Jenny B
#345588 - 05/05/09 11:04 AM
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mrae
Reged: 02/05/09
Posts: 481
Loc: California
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Will you please e-mail me so I can talk to you. thomas197887@yahoo.com
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I also support you trying the diet and seeing if it does help but be warned that you could have a honey moon period of feeling well on the gluten free diet. My BIL is celiac and thought my symptoms looked like his so I got tested. My blood test was inconclusive so I tried it and felt really good for four months then the symptoms (ibs) starting showing up again. The forum I belonged to kept insisting that I was getting hidden gluten somewhere and I turned myself into a paranoid freak about food and cross contamination. Long story short, my mom and sister carefully explained to me how worried they were about how many foods I was eliminating (gluten, soy, high fructose, dairy (have to eliminate that tho) etc). I took a hard look at everything and noticed that yeah, I am really not better doing this gluten free thing. I was diagnosed with IBS and colitis in my younger years. So I slowly started adding back in the wheat but with Heather's safe white bread mostly sour dough and so far so good. I am not trying to stear you away from gluten free just wanted you to know that if it helps stay with it but if it doesn't it could be just the many ways that ibs manifests itself. Good luck!
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IBS A for over 22 years, lactose intolerant
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Yes I am going to have see a very big improvement in order for me to stay eating gluten free. I will give it a month or two but by then if it hasn't done me any good I will not continue it. Why put yourself through that if you don't have to.
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One more thing also is I have not been extremely sick how some people with gluten intolerance seems to be if they eat gluten. My main problem is urgency, and fatigue. Every once in a while I will have cramps but it is not on a daily basis. So if this gluten free doesn't work after a few months than I will not continue it.
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Re: Aly
#345654 - 05/06/09 05:24 AM
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Aly
Reged: 08/16/04
Posts: 669
Loc: Columbus, Ohio
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They are negative! whew! I had an endoscopy yesterday and they took a biopsy anyway, just to double check. But seeing as the last biopsy was negative, I'm not worried.
The GF diet didn't really help me, which is why I always thoguht I didn't have celiac.
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IBS-A
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Re: Aly
#345669 - 05/06/09 09:02 AM
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mrae
Reged: 02/05/09
Posts: 481
Loc: California
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That is so good. I am happy for you. Now you won't have to deal with eating a way that makes you feel terrible anyway.
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Well so far eating wheat/gluten free hasn't helped at all. So now my doctor wants me to eat low fat which is what I was doing to begin with. I have started taking Lomotil to deal with it for now until we can figure out what else to do.
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Fen
#358393 - 05/05/10 08:12 AM
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Cyndy
Reged: 03/05/05
Posts: 1301
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Do you still follow a gluten free diet?
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Re: Fen-bump
#358449 - 05/06/10 07:34 AM
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Fen
Reged: 03/01/08
Posts: 574
Loc: Central NY
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yes.
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IBS-C
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thanks
#358450 - 05/06/10 07:40 AM
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Cyndy
Reged: 03/05/05
Posts: 1301
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Do you find it difficult to follow the EFI diet and the GF diet? Can you give me some idea of what you eat for your meals, what brand breads and cereals you buy, what you snack on? I'm losing weight and having a hard time doing both diets.
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Re: thanks
#358498 - 05/07/10 04:13 AM
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Fen
Reged: 03/01/08
Posts: 574
Loc: Central NY
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No. I won't do that for two reasons:
1. eating GF allows me to eat things that I could not eat before that are not necessarily compatible with the EFI diet.
2. I am pregnant, which has affected the amount of food that I eat, the type of food that I eat, as well as how often I eat. My diet would therefore not be a good example for you to follow.
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IBS-C
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