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Greg G

20 Weeks Pregant And Blood Test Showed Positive For Celiacs But No Symptoms

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My wife just got diagnoased with celiacs based on a blood test that was ordered due to a concern with low iron by her endocrinologist who she sees due to being an insulin dependent diabetic. The OB and high risk doctor where not really worried about the iron levels (they are not terrible) and don't seem to have a clue about celiacs. My wife does not have any symptoms that can not also be explained by being pregnent (she is often tired but does not have abdominal pain, gas, or anything like that). She tried going gluten free as soon as she found out but found that the diet led to high blood sugers (Many the kinds of food you get pointed to are pretty much not the right food for diabetics) and got worried that she was doing more harm than good. At this point she has cut down on glutens but not eliminated it while we try to get smarter. From what I've read there is no such thing as having a "mild" case of celiacs so I worry about my wife and the baby. My wife is very frustrated (not to mention pregnant woman hormones) and does not want to believe the this could be true (neither do I for that matter). How often do the blood tests turn out to be wrong? We have an appointment with a gastro person in a few weeks but I don't think they will do a biopsy due to her pregnency. At this point the baby is right on schedule weight wise but being 20 weeks in the real growth has not started yet so I don't know if that means anything.

Sorry for the ramble but I'm trying to figure out how serious this is and how best to proceed. Reading this forum I have to admit I find myself pretty worried.

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Hi Greg, and welcome to this board. You certainly have reason to be worried, as celiac disease can lead to severe problems with the pregnancy and make the baby sick, too. Good for you for coming here.

The way to go is NOT to replace foods containing gluten like pasta and bread by gluten-free ones, especially because gluten-free goods are higher in carbs and sugars than the 'real' thing. It would be much better to pretty much entirely eliminate breads and pastas, as well as cookies and other treats, and have them just now and then as a treat.

Your wife should rather eat naturally gluten-free foods, like meats, vegetables and fruits instead, and hopefully that will help in keeping her blood sugar much more stable.

The blood tests are pretty much never wrong when they are positive. False positives are pretty much unheard of, but false negatives are common.

You doctor is wrong in claiming that low iron is not a problem, as iron is essential for the baby's brain development. The baby of course will take the iron from your wife, depleting her even more. The reason she is iron deficient is, that her villi are too blunted to take up iron from her diet. She absolutely needs to take supplements. The liquid kind would be best, as it's absorbed easier (hopefully her intestines aren't so damaged that they can't absorb it at all, in which case she needs iron injections).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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Make sure your wife is taking extra folic acid - talk to the doctor about that. I know it is one of the things not absorbed well by a celiac gut and is very necessary in pregnancy. I am fairly new to this board but I think Ursula is right - if you eat meats, vegetables, fruits, and nuts if tolerated should keep the blood sugar steady. A lot of the nutrients that a celiac gut is starving for are in those foods.


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12/06 Tested (-) for Celiac after 2 - 3 months Gluten Free

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You don't really get false positives, unless they gave you the results for another patient.

Many - MANY - celiacs do not have GI symptoms. Many don't get diagnosed until they are tested due to a deficiency, like anemia, so this is really no surprise.

The gluten free diet need in no way conflict with a diabetic diet, but she would have to avoid some of the more common prepackaged gluten free specialty items. Instead, she'd have to stick with more of the whole, naturally gluten free foods, but there are SOOOOO many to choose from. In fact, the gluten-free grains that she may now be introduced to - particularly quinoa, millet, amaranth, and buckwheat, are *better* for her blood sugar than wheat ever was, as they are higher in protein, fiber, and fat, and lower in carbohydrates, relatively speaking. They're also at least, if not more, nutritious. (And don't forget about wild rice!)

It will take time to learn how to adjust to the diet, and what foods work for her on the diet with her additional restrictions. (Hopefully she doesn't have any other dietary restrictions, but many of us do, so there's help here for that too. :) ) But going gluten-light will still cause damage to the villi which will keep her from properly absorbing the nutrients from her food and will continue to keep her immune system attacking her own intestines. Not a good state, especially if she may have any systemic symptoms that she doesn't connect with eating gluten at the moment.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Guest Kathy Ann

You are right when you say this is serious. And I agree 100% with all the dietary suggestions everyone has made. I would ask your health care provider about getting some good whole food supplements as well. But please don't despair. This is not the end of the world by any means and everything should be just fine if you are diligent in making wise changes and choices right away. Remember again, that a little gluten IS NOT OK. It's all or nothing with this one, I'm afraid. I am so proud of you in how you are looking out for your wife and child. It's wonderful.

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Guest nini

if the blood test was positive, she has it, sorry... but lucky to find out now.

I didn't find out until my daughter was 3. I had a very complicated pregnancy because of undiagnosed Celiac. She absolutely needs to be 100% gluten free, but AVOID the substitute products. Eat foods that are naturally gluten free, as has been suggested, meats, veggies, fresh fruits, cheeses if she can tolerate dairy, nuts and seeds, brown rice, teff, quinoa, millet, buckwheat... this is important and kudos to you for coming here and looking out for your wife and baby. Because of my undiagnosed celiac, I very nearly died during childbirth and my daughter was premature and she almost died too... Take this VERY seriously. I was diagnosed by bloodwork alone, it is valid. False positives are practiacally unheard of.

I was also hypoglycemic and "pre diabetic" and morbidly obese before my diagnosis. After my diagnosis that has all resolved itself and I am so much healthier (and I lost 110 pounds)...

check out my newbie survival kit for some ideas (look for the naturally gluten free menu suggestions) simply click on the link to my web page in my signature. At the bottom of my webpage there is a link to download the Newbie Survival Kit. You can download the zip file or the individual files.

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i would recommend finding a knowledgable doctor in your area about celiac. often the best way is to contact a local support group and tell them your situation...they should be able to tell you who is good and who isn't!

best of luck and happy to have you on our board!

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Guest cassidy

I'm 20 weeks pregnant as well - due May 3rd.

I have to agree with everyone else - blood tests rarely give a false positive and you can eat naturally gluten-free foods that are very inline with a diabetic diet. I'm sure this is the last thing that she wants to deal with right now, however you are lucky that you found out now and the second half of the pregnancy can be a gluten free one. Since she has diabetes she may be more used to reading labels and watching what she eats compared to other people who can just eat whatever.

I also think that you should trust the test results and have her go gluten-free while she is pregnant. If she wants to have an endoscopy or get other testing after she has the baby - that would be the time to do it - not now.

Good luck! If you can get her on this board there is a lot of great information people can share with her. That might be a good start.

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The T1 diabetes was probably caused by the Celiac disease, it can cause all sorts of autoimmune issues. I have a few myself. :(

Celiac is really serious, especially when it comes to pregnancy. It really does cause a whole pile of problems especially later in life.

I'd like to recommend a book called "Dangerous Grains". And you might also want to check into eating a Paleo style of diet (Loren Cordain has a book about it). We're so programmed to eat all this starchy/sugary garbage being manufactured these days. I like the idea of getting back to eating 1 ingredient foods, or combining those 1 ingredient foods myself. I think it'll go a long way towards restoring our health, the economic health of farmers, and our environment. Oops, sorry waxed a bit philosophical there because I'm reading "The Omnivore's Dilemma".

And you know, take this opportunity to improve your entire family's health, including your own! You're a good husband for checking into this for your wife. *cheers*

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Thanks to everyone for your advice. My wife and I have agreed to make our home gluten free (other than bread for making me lunch for work). Many of the signs of celiac are also symptoms of being pregnant. We find that she is tired all the time even though we are in the 2nd trimester. Perhaps that has to do with eating glutens. How long does it take for a gluten free diet to start helping? I am especially interested in regards to getting proper nutrition for the baby. I've read that it takes 6mos or more for the intestines to heal but I hope that we can positively effect the baby prior to that considering that we only have 4mos left of the pregnancy. I read about somone else drinking ensure to help boost nutritional levels. Are there other things we can do to increase the value of the food for the baby while my wife heals?

We live in central NJ. If anyone knows of a good doctor in that area to get advice from it would be wonderful. So far I have been very disapointed in the knollege of our OB and High Risk Doctor.

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Keep your sandwich bread away from your wife and don't let her make your sandwiches. You have to have the mindset ~ that bag of bread is poison.

It is an all or nothing diet. She has to go through all personal hygeine products like lipstick. You have to read every label, even if it is a condiment. (most soy sauce has wheat in it) Avoid eating out at restaurants.

If you can't find a support group in your area, don't worry ask any question on this board and someone will help you as fast as possible.

L.


Michigan

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Guest cassidy
Thanks to everyone for your advice. My wife and I have agreed to make our home gluten free (other than bread for making me lunch for work). Many of the signs of celiac are also symptoms of being pregnant. We find that she is tired all the time even though we are in the 2nd trimester. Perhaps that has to do with eating glutens. How long does it take for a gluten free diet to start helping? I am especially interested in regards to getting proper nutrition for the baby. I've read that it takes 6mos or more for the intestines to heal but I hope that we can positively effect the baby prior to that considering that we only have 4mos left of the pregnancy. I read about somone else drinking ensure to help boost nutritional levels. Are there other things we can do to increase the value of the food for the baby while my wife heals?

We live in central NJ. If anyone knows of a good doctor in that area to get advice from it would be wonderful. So far I have been very disapointed in the knollege of our OB and High Risk Doctor.

Unfortunately, many of us are disappointed in our doctors. Many doctors don't know much at all about celiac and they give people bad advice based on what they learned in medical school 30 years ago. You have to do what is best for your family, but since this isn't a disease that requires medication or real monitoring, most people do better figuring out the diet by themselves. Hopefully, someone here lives close - you might want to ask about a doctor in another post listed under "doctors" to give a better chance of someone in the area seeing it.

I would recommend your wife going on a basic diet of meats, fruits, veggies, rice, and dairy if she can handle that. If you go back to basics you give your body a better chance to heal. Digestive enzymes are great for us as they make it easier to digest your food. My doctor said they are fine to take when pregnant. I also drink a lot of kefir - a liquid yogurt with tons of good bacteria. It is very high in protein and it has lots of bacteria to help the intestines get a good balance. All the healthy foods the baby needs are on this diet so she probably will be able to eat better than ever. I took a class and they said to get 80 grams of protein a day. I usually do drink a Boost or Carnation Instant Breakfast (the powder is ok but not the chocolate malt) to make sure I get enough protein.

As far as the healing is concerned - it isn't like there is no healing for 5 months and it all happens right at the 6th month. Your body is gradually recovering and every day without gluten is getting you closer and closer to getting well. You might be surprised at how much better she may feel. I had all sorts of weird symptoms that went away when I went gluten-free. She may not be able to tell until after she has the baby because pregnancy symptoms certainly make you feel different.

Good luck.

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I had a lot of fatigue as my symptom along with intestinal problems. The intestinal problems stopped about 2 days after going gluten-free but the fatigue slowly but surely got better. I remember how at first I was utterly exhausted after work and the idea of going out or going shopping was hideous. Then I started actually feeling ok enough to go shopping and get some things done after a full day's work. It was nice to figure out what happened to all my energy!

Rather than seeing a doctor though, I think you'll learn more from books, the Internet and other celiacs.

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I am so glad that you guys found out that this is her problem so it can be taken care of. I think the people above have made some great suggestions. I am glad to hear that she has made the disicion to go gluten free. I don't want to scare you but at the same time want your wife to know how serious it is that she stay gluten free while pregnant. I did not know untill after my last baby was born that I was celiac. Due to this desease and that it keeps you from absorbing enough nutrients I had my daughter at 29 weeks wieghing just 2 1/2 lbs. due to a placental abrubtion. They say nature was just doing it's job trying to get rid of the baby since I was unable to support it due to the celiac. I am far from the only person that this has happened to and have heard many similar stories. Healing is sapossed to start fairly quickly after going gluten free but I am unsure how long it takes to start absorbing enough nutrients for both mom and baby. Make sure she is on a prenatal vitamen. My grandmother is insulin dependant and celiac and she is doing great eating gluten-free. I donno how she does it but I know it is possible to deal with both. Good luck getting this all under control and I hope you have a healthy baby.


Myself-Age 25....I have had symptoms since at least 1998 if not since infancy (was diagnosed with malnutrition as a small child)...Positive results with gluten free diet!

Hannah-Age 5.....Has symptoms....Inconclusive blood tests....Positive diet response to both gluten free and lactose free!

Grace-Age 1.....Born at 29 weeks due to me having celiac....Has reflux and a feeding tube.

Husband-Not Celiac......has found that he does feel better when not eating allot of gluten.....is gluten free at home.

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I went 29 years without being diagnosed and had a ton of different symptoms and problems that no doctor could seem to figure out. Once I went gluten free, it took 2 weeks to get the diet straight and then another 2 weeks to start feeling better. I never opted to have a biopsy only because it would have taken more time, time that I didn't want to wait. I just wanted to feel better. I did have an endoscopy done about 1 year after going gluten free and everything came out fine. It took me about 2 months to get used to the diet, and I will never stray from it. I suggest doing alot of reaearch and reading labels everytime you eat or buy something. I bought a gluten free cookbook and bake most of my food. Good luck.


Myself & 2 children (when they were ages 20 months & 4 & I was 28) diagnosed celiac in July 2005

All Gluten-free since July 2005

My mother & 1 sister diagnosed celiac in December 2005

same sister diagnosed with IBS March 2006

1 other sister self-diagnosed celiac in February 2006

2 other sisters & 1 brother have not been tested yet

My 3rd child is gluten free, but we are not certain he is celiac

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Congratulations are in order for a number of reasons, first being the pregnancy!

Secondly, you have no idea how lucky your wife is to have found out now and not have to have gone through decades of hell until some celiac savvy doctor finally connected the dots. There are many, many celiacs who are totally asymptomatic, and that is exactly what they are talking about when they mention the "tip of the iceberg". The tip over the surface are those of us lucky enough to have been diagnosed, the huge iceberg underneath the water represents all the people walking around, searching for answers, and undiagnosed. The medical community is sadly lacking in current knowledge about this disease and little by little, we fight for every little bit of exposure to get this disease onto the family physician's "radar screen" to get more people diagnosed.

When you de-glutenize your house, first thing you need to do is get rid of the toaster (stupid me didn't even think of that when I first went gluten-free, thank goodness for this site). Also, any pots or pans that are porous or wooden spoons, etc. They can absorb the gluten and then contaminate other foods.

I also would like to congratulate your wife for having such a wonderful caring husband who is taking the initiative and gathering all the info you can. Kudos to you!

I was one of the lucky ones. All my pregnancies (three pregnancies, four children) were before I was properly diagnosed and I was consuming massive amounts of gluten through all the pregnancies and all my children are fine and beautiful (the twins were premature though, but that is common with multiple births). But I agree with all here in saying that it is imperative she goes 100% now. No turning back.

There are no false positives. There are lots of false negatives. Also, regarding the biopsy, don't sweat that either. The only time the biopsy is of any additional importance is to show any other complications going on, but to confirm the diagnosis of a biopsy? Nope. Half the time, it's not accurate anyway. Picture this: The damage done in the intestine to the villi is "patchy", especially in one who is not displaying noticeable symptoms. Now picture your back having a blotchy rash on it. Picture blindfolding a doctor and asking him to take a few samples of that back. It's basically hit or miss as to whether he is going to "grab" a rashy part or not, right? Well, it's the same with the biopsy of the intestine. It's hit or miss as to whether they will take the biopsy samples from a damaged part or not.......

Anyway, enough rambling, just wanted to say any questions, just fire away, we're here to help.....

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

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Tom Nansbury

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