Can you go gluten free even if you do not think you have Celiac?

[dancer67]

I had two blood tests come back negative for celiac. My GI Dr claims the test will show 97% of those who test positive for celiac. Leaving a 3% error for those who actually have it, that will not show.

 

I heard that going gluten free can help you feel better though, is this true?

 

Can someone give me a recommendation to a website and some books to read through to go Gluten free?

 

And we are limited for money, is this a hard and expensive diet to do?

[thescrappyhomeschooler]

One of my sisters was diagnosed with celiac a few years ago. Her doctor told her to tell her siblings to get tested. I was tested via blood test and told that I did not have celiac. That was probably in 2005 or 2006.

 

Back when I was about 26 or 27 (I'm now 42), I went to the doctor about ongoing pains in my intestines. I thought I must have diverticulitis or something like that. After a few humiliating tests, they diagnosed me with irritable bowel syndrome, but didn't really give me any guidelines on how to manage it. The things I read about IBS didn't seem to help my symptoms, either.

 

Fast forward to last winter. Another sister of mine, who also was told she does not have celiac, decided to stop eating gluten. She couldn't believe how much better she felt. She persuaded me to try it. So, since May, I have not eaten gluten (except for two accidental times- both with severe intestinal pain), and I am so gloriously amazed at how different my life is! I could have been pain-free for 20 years if I'd only known! No more nights lying awake with twisting, wrenching pains in my guts!

 

There's no harm in trying to go gluten-free, and the potential to feel better is great.

[melissel]

I had two blood tests come back negative for celiac. My GI Dr claims the test will show 97% of those who test positive for celiac. Leaving a 3% error for those who actually have it, that will not show.

 

I heard that going gluten free can help you feel better though, is this true?

 

Can someone give me a recommendation to a website and some books to read through to go Gluten free?

 

And we are limited for money, is this a hard and expensive diet to do?

 

Yes, you can. I have. Your doc may be right about the test, but I also believe there are a lot of people who are sensitive to gluten without having celiac disease. Gluten-containing products give me terrible reflux and other digestive issues. I haven't eliminated gluten entirely from my diet (because I am weak), but since Thanksgiving, I've not even been making an attempt to hold back. I realized yesterday that the pain I'd been having in my shoulder, elbow, and finger joints is back at a full level, plus I'm having problems with my knees.

 

I don't have any specific recommendations to make--I just Googled a lot when I had a specific question and read a lot here. I already knew something about it, so it was more a matter of learning which tricky foods to avoid (oatmeal, for one).

 

It can be expensive if you want to go the "replace all baked items with gluten-free baked items" route. We opted to (for the most part) just cut breads and the like out of our diets. I use a lot of brown rice and potatoes. I buy loaves of bread for the kids, but I limit how much they can eat, and I don't eat it myself. My one indulgence is Pamela's all-purpose baking mix. With that, I can indulge a baked goods craving through pancakes, waffles, muffins, or drop biscuits (grate in lots of cheese and add rosemary, mmmm!). It has increased our grocery bill a bit, because breads are such easy meal fillers. But I'm also trying to cut back on carbs in general, and making meals that are just meat and vegetables IS expensive. So there's that.

 

HTH!

[Tess in the Burbs]

Try it. My "irritable bowel" was cured after 24 hours gluten free :-)

[In the Rain]

 

I heard that going gluten free can help you feel better though, is this true?

 

 

 

My GI doc would say so. When my scopes came back negative for celiac, she suggested I go GF anyway. She said nobody should be eating bread products anyhow. She doesn't advocate all of the GF products though, just avoiding refined flour type products in general. I wish I'd asked her more about it, but I was still processing the comments when I left. She is Indian, and very big on whole grains and vegetables.

 

As for expense, I think the diet becomes expensive when you buy GF replacements for wheat products. It isn't avoiding gluten that is expensive. IMHO, the expense comes when trying to recreate baked goods and other comfort foods.

[NicAnn]

Ditto what others said. There are many people who would benefit from a GF diet, but don't have Celiacs. It's also important to remember that there is a differences between Celiacs and a food allergy.

 

The diet does not need to be expensive. We do buy a lot of packaged food for DD, but that's really only because it's easy for her to take with her when I'm not around. I can't expect others to cook from scratch for her when she visits for a play date. But for DH and I, it is very economical.

[Holly IN]

I was diagnosesd with IBS long time ago. Since going Low carb/gluten free/primal I felt so much better. Now even some GF mixes messes with me. So I still have to watch what is in the GF mixes.

 

I scratch cook GF stuff by using coconut flour or almond flour.

 

Holly

[MyLittleBears]

I was having lots of GI issues a while back. The doctors ran many tests and could find nothing, so I took matters into my own hands and completely cut out dairy and wheat. All my issues magically disappeared. As it turned out, I was lactose intolerant but I enjoyed how well I felt without the gluten that I decided to stick to it. I have so much more enegry and an added bonus was weight loss. :001_smile:

[gardenmom5]

ONLY those with celiac will show on a blood test, but there are many with gluten sensitivity, but that do not have celiac.

 

Many spectrum kids, sensory disorder kids, and many others respond well to GF. My son's DAN!naturopath stated it can mimic (not cause) bipolar or schizophrenia, so who knows how many of those "mild" cases (true mental illness is not caused by diet) are in reality gluten intolerance. oh, and western drs will not support this.

 

those who look for non-celiac gluten sensitivity use a stool test, as it is faster than going gf and seeing if it makes a difference. (which people might not notice, until they then eat gluten again.)

 

eta: you can google gluten free bread machine recipes and make your own. my niece has celiac, and makes the most wonderful baked GF goodies.

Edited December 27, 2011 by gardenmom5

[Susann]

The only 100% reliable indicator of celiac disease is an upper GI to check the villi. By the time we were able to find a dr that had a clue about cd, my dd villi were totally destroyed. We're now dealing with the issue of cd plus the added health issues involved with malnutrition. Also, with the positive diagnosis thru an upper GI it becomes a documentated autoimmune disease where gluten free foods are tax deductible among other things.

[dancer67]

Thank you. I do have IBS along with many other symptoms that fit. (I take a med that eliminates IBS pains, been on it 5 years)So I want to give it a try. It just seems so confusing as to what you can and cannot eat.

 

I feel like it would take me days to figure out what is a no-no and what isn't.

 

If you go GF, will your body ever heal so you can absorb certain nutrients again(Such as Iron) through food?

[Mom-ninja.]

ONLY those with celiac will show on a blood test, but there are many with gluten sensitivity, but that do not have celiac.

 

Many spectrum kids, sensory disorder kids, and many others respond well to GF. My son's DAN!naturopath stated it can mimic (not cause) bipolar or schizophrenia, so who knows how many of those "mild" cases (true mental illness is not caused by diet) are in reality gluten intolerance. oh, and western drs will not support this.

 

 

:iagree: There's celiac, gluten sensitivity, and allergy to wheat. This site is very helpful in explaining the difference.

 

My Dr. told me about mental health issues due to gluten. He is an MD.

 

My two favorite books about gluten are Gluten Free for Dummies and The G Free Diet

[Mom-ninja.]

I feel like it would take me days to figure out what is a no-no and what isn't.

 

If you go GF, will your body ever heal so you can absorb certain nutrients again(Such as Iron) through food?

 

 

It won't take you days. It will take you weeks. Perhaps months. ;)

 

If your celiac and have damage, yes, your body does heal once you go gf.

 

Read those two books and the site I linked to. They explain a lot.

[ocelotmom]

Baked goods don't even have to be particularly expensive if you're not trying to buy them pre-made.

 

http://frugalabundance.com/glad-flour.htm is a recipe for an inexpensive flour alternative (I don't use this one personally, so can't vouch for it).

 

I buy shredded coconut in bulk, and use it to make coconut milk, then dehydrate the pulp that is left over to make coconut flour (since that's what coconut flour is - defatted coconut). It's pretty cheap that way.

[Hope in God]

Some people that have celiac will always test negative on the blood test because they just don't produce the antibodies that the test is looking for.

 

The only way to be sure is to get the intestinal biopsy and scope and for that to be accurate the patient has to be eating gluten for 3 months prior (they cannot be gluten free before the test).

 

My son has tested negative on the blood test 3 times and yet if he has gluten he gets unbearable stomach pain. Needless to say I won't be putting him on gluten for 3 months for him to have the scope test.

 

There is gluten in wheat, kamut, barley, semolina, spelt, oats (you can buy gluten free oats but many celiacs can't tolerate it anyway). Look out for products containing malt (such as chips with malt vinegar) because malt is made from barley. Vanilla can be a problem because the alcohol can be grain based (Kirkland vanilla from Costco is gluten free).

 

You CAN have millet, rice, sorghum, fonio, potatoes (we eat a lot of these) bean flours (garbanzo, fava, black bean etc...). Bob's Red Mill makes a lot of gluten free products and my favorite flour blend is by Namaste (but we can't have it anymore because we are also off rice:confused:)

 

There will be mistakes.

Everybody makes mistakes for a while with gluten free diets.

[PrincessMommy]

I've been doing a little research on this as well. One of the books I read said that some people are wheat sensitive without having celiac. I think it was "Wheat Belly". Good book to start with. I think the guy has a blog too, but the book was helpful. I'

[lexi]

Our whole family did because one of our daughters has allergies. We all feel so much better and the kids are not sick as often. I can tell I have lots more energy and just feel better overall. We're glad we are GF even if it takes some work in the beginning.

[TracyR]

Oh absolutely you can go GF without having Celiacs. I think I may just have this and this week I'm phasing it out. I've been living off of chicken broth this week though do to the tummy flu going around the house. But I do feel a tiny bit better.

I just maybe. Its common with those to have celicacs with thyroid issues though. Or the fact I've phased out milk , I know I had lactose intolerance as a kid. Its hard though to phase this stuff out if you really enjoy eating it though. Sigh.

[dancer67]

Well, I got some of the books mentioned here. I will be doing a lot of reading. I have the websites to read as well.

 

I have a few questions that I cannot seem to find answers to.

 

one, is beverages. Are you supposed to cut out all sugar? And I know no beer(yuck dont drink it anyways), but besides water, what are you allowed to drink?

 

I cannot drink soy or have soy. It has estrogenic properties in it and I want to stay away from those. I already have female issues so I dont want to add to it.

 

And, this is kind of out there, but by any chance could going gluten free help with my menstrual cycles?

 

I am really excited to get started, because I read all the symptoms of gluten intolerance, and I have LOTS of them. Iron Def anemia, IBS, depression, anxiety, excema, GI issues, Folic acid def,(only corrected by supplements). Just to name a few.

 

Thank you for all the help, you ladies are terrific!

[bettyandbob]

You can do it inexpensively, but you need to be willing to rethink how your meals look completely rather than have gf versions of foods you are used to.

 

To do gluten free on the cheap, you don't cook from boxed mixes, you don't buy gluten substitutes for frozen pizza or bread. You won't be eating sandwiches or spaghetti.

 

I've often subbed brown rice for pasta in meals.

 

Think about shopping only the outer aisles of the grocery: start with fresh produce, meats, frozen produce and dairy. Head to canned veg aisle and get canned or dried beans and brown rice.

 

when you start eating this way it takes longer to plan meals and grocery shop, but you get used to it and everything becomes easier and faster.

 

My family went gf almost 10 years ago bc dd was dx celiac. Oldest is suspected to be celiac and dh has since decided to eliminate gluten away from home too. If we weren't gf, we'd probably have a lot more junk in our house. 10 years ago there was not a selection of gf junk available, like there is now. So, I just stopped buying most junk food.

[LaxMom]

I am gluten free and not celiac. My sensitivity manifests itself as widespread joint pain.

 

I eat pretty normal food. For some things that contain obvious wheat, barley or spelt, I look for gluten free options. So, I buy San-J gold label (gf) soy sauce (traditional has wheat). I buy gf pasta, but we eat more rice, quinoa, and polenta than pasta these days. Sugar is gluten free. ;)

 

For beverages... I no longer drink good beer. There's gf beer that people say is drinkable, but I'm not convinced. Hard cider and wine are naturally gluten free. Coffee and tea, unless it's something with roasted barley, are gluten free. I avoid soy as well - no specific reason, I just don't care for how pervasive it is, with hormone precursors - and get along just fine without running into it. The only thing I can think of that is definitely not gluten free is Rice Dream (Almond Breeze is) because it has barley malt. I like Silk refrigerated almond milk as I seem to be developing lactose intolerance as I get older.

 

I like Mama's Almond Blend as my go-to all purpose flour. It makes great pizza crust and biscuits. (Not "good for gluten-free", just good.) For other baking, I use Bob's Red Mill GF All-Purpose. It has beans (garbanzo and fava) but no soy. That, I buy in bulk through my food buying club.

 

There are items that should be naturally gluten free that aren't, so label reading is important. For instance, Contadina tomato paste has just tomatoes (or tomatoes and salt, I can't remember) as the ingredient. Their "Italian herb" tomato paste has gluten added, though. If you can't figure it out, there is usually allergen information on company websites, or you can just contact them and ask.

 

If you're having an auto-immune response to gluten (or anything else, really), it's entirely possible that it can express itself in ALL the ways you've described. I wouldn't hang my hat on that, but it's possible that you will find improvement in any or all of the issues you're experiencing. (My cycle seems to finally have reset after going gluten free AND appropriate thyroid supplementation, after being set to an annoying 14 days for a while. :blink:) At the very least, you can then rule out the ones that seem unaffected by dietary changes and look at them more deeply on their own.

Edited December 27, 2011 by MyCrazyHouse

[ocelotmom]

one, is beverages. Are you supposed to cut out all sugar? And I know no beer(yuck dont drink it anyways), but besides water, what are you allowed to drink?

Assuming you're talking just a plain old gluten-free diet and not GAPS or something... Cutting out sugar is good for anyone, but not specifically a part of a gluten-free diet. Most drinks are gluten-free by default.

 

Most soda and juice are fine, though I'd read labels and err on the side of caution with anything processed. Coffee is fine. Plain black and green tea are fine.

 

You need to be careful about herbal/flavored teas - many are fine, some aren't (if soy is an issue, that's probably a bigger concern - I see soy listed as an ingredient in many herbal teas).

 

Most coffee-replacement type drinks are barley-based, and you want to avoid that. Similarly, anything containing "malt" is out, so no ovaltine or malted milk. You probably want to read ingredients closely on hot cocoa mixes because of this, too. But hot chocolate made from cocoa powder is fine.

 

Oat milk is a bad idea (there are a lot of cross-contamination/cross-sensitivity issues with oats). Any other milk (dairy, nut-based, coconut, rice...) should be ok.

 

Avoid grain-based alcohol. I don't drink beyond the occasional wine or cider, so can't really answer questions about this.

Edited December 28, 2011 by ocelotmom

[mommymilkies]

The only 100% reliable indicator of celiac disease is an upper GI to check the villi. By the time we were able to find a dr that had a clue about cd, my dd villi were totally destroyed. We're now dealing with the issue of cd plus the added health issues involved with malnutrition. Also, with the positive diagnosis thru an upper GI it becomes a documentated autoimmune disease where gluten free foods are tax deductible among other things.

 

:iagree: my brother just had a positive scope/biopsy after negative blood tests and a 30 lb weight loss. My 7 yo has Hashimotos, my 4 yo had bad encoporesis and I have had IBS symptoms for about 2 years. Going GF has changed our lives sooooooo much. I'm never going back.