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Just Got Results Back-positive


Jennifer2

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Jennifer2 Explorer

Hi, I just got some blood work back.

Endomysial IgA and transglutaminase both came back positive.

Doctor wants me to start a gluten free diet. :o

So obviously breads, flour, grains etc is out :( , but I'm not sure what else to worry about?

Any tips on the adjustment?

Jennifer


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ravenwoodglass Mentor

Start out with whole foods, unprocessed. Fruits, veggies, fresh unpreseasoned meats, nut butters, beans, rice, unseasoned, potatoes, sweet potatoes. Try to avoid processed foods as much as you can. It is also a good idea to delete or strictly limit dairy until you have healed. Go easy on the specialty gluten free baked goods at first as many have ingredients that we don't commonly eat and if you should have an issue with say perhaps soy flour it will be easier to pinpoint the issue after you have healed. You also should spend some time looking over lots of the product threads as you will get a lot of info from them. The most important thing is if in doubt call the company that makes the item before you consume.

Jennifer2 Explorer
Start out with whole foods, unprocessed. Fruits, veggies, fresh unpreseasoned meats, nut butters, beans, rice, unseasoned, potatoes, sweet potatoes. Try to avoid processed foods as much as you can. It is also a good idea to delete or strictly limit dairy until you have healed. Go easy on the specialty gluten free baked goods at first as many have ingredients that we don't commonly eat and if you should have an issue with say perhaps soy flour it will be easier to pinpoint the issue after you have healed. You also should spend some time looking over lots of the product threads as you will get a lot of info from them. The most important thing is if in doubt call the company that makes the item before you consume.

Thanks!

I'll start with limiting dairy also. Is there a general rule of thumb as to how long it takes to heal, or how long I should wait before trying to add dairy back?

lizard00 Enthusiast
Thanks!

I'll start with limiting dairy also. Is there a general rule of thumb as to how long it takes to heal, or how long I should wait before trying to add dairy back?

I've always heard around 6 months before trying dairy again, but each person is different. Healing time depends on how much damage has been done and how strict you are with the diet.

At 6 months, my new GI would NOT do an endoscope on me to look for celiac because he said that chances of it being negative were pretty high. Whether I was fully healed or not, who knows. But I also didn't go years and years without being diagnosed. So maybe I didn't have a lot of damage to begin with...

Darn210 Enthusiast
Thanks!

I'll start with limiting dairy also. Is there a general rule of thumb as to how long it takes to heal, or how long I should wait before trying to add dairy back?

I think it's trial and error . . . some people don't even need to limit dairy. We didn't. I did give my daughter the lactaid chewables if she was consuming a "decent" amount of dairy in one sitting. I don't even know if we needed it. It's hard to get real feed back from a six year old. We stayed on the lactaid for two or three months but we also were fortunate that during her endoscopy the GI (at my request, don't know if he would have done it otherwise) took a sample to have her lactase level checked. It showed low but not too far out of the limits.

happygirl Collaborator

The Celiac Survival Guide ( Open Original Shared Link ) from The National Foundation for Celiac Awareness (www.celiaccentral.org) is a great resource.

Also, great information from the Gluten Intolerance Group (GIG) on getting started can be found here: Open Original Shared Link

Information on reading labels, safe foods, etc:

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

A great book to get started is "The first year - Celiac Disease and Living Gluten Free" by Jules Dowler Shepard.

LDJofDenver Apprentice

A few other handy things that you may not have thought of.

If you don't live alone, you


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Korwyn Explorer
Hi, I just got some blood work back.

Endomysial IgA and transglutaminase both came back positive.

Doctor wants me to start a gluten free diet. :o

So obviously breads, flour, grains etc is out :( , but I'm not sure what else to worry about?

Any tips on the adjustment?

Jennifer

One of the things that has been helping me survive has been: Living Gluten-free for Dummies (loaned to me by a friend) and also Gluten-free cooking for Dummies. Both excellent starter books.

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    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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