After 2 years of gluten free diet

[Tiktea]

Since I was a little child I suffered many symptoms of Celiac Disease (seizures, fevers, colds, sores, joint pain, diarrhea, abdominal pain, loss hair, and migraines, anxiety attack, claustrophobia, passing out with no reason, etc: just to mention some of them. 

I had been seen different specialist (neurologist, internist, gastroenterology, oncologist, maxillofacilal, endocrinologist, etc and I even tried alternative medicine. 

Finally when I was 30 I heard for the first time the word Celiac Disease, in my case also with lactose intolerance.

However I was diagnosed in another country different than US, to be honest the information or knowledge over there by that time was very poor . The doctor never told me to visit a nutritionist or recommended me to stop eating gluten. 
So I keep eating gluten like pizza or little pieces or bread once in a while. My live goes...

Then I moved here to US and because I started getting really Ill and by my husband care finally I started taking care of my health. I have been under a 100% gluten free diet for about 2 years. 

On the last 8 -9 months my health went down, iron deficiency, hair loss, tired all the time, anemia etc. currently I am seeing an internist and I explained him that i was diagnosted with celiac disease, he ordered a blood test but it came negative. So he said he has doubts than I have Celiac disease.

Right now I am taking iron pills every day and the doctor saw me 3 times so far on the last 9 months. I kept asking him to give me a reference to see a gastroenterologist by he said he wants to wait (wait for what) and he does not think it is necessary.

I know it is a long post but I am soooo frustrated after years and years being sick, also feeling than my internist does not believe me.
,

[Jmg]

 Hello and welcome

You need that referral I think as:

1 hour ago, Tiktea said:

I am seeing an internist and I explained him that i was diagnosted with celiac disease, he ordered a blood test but it came negative. So he said he has doubts than I have Celiac disease.

if the internist knew you were 2 years into a strict gluten free diet he should've realised that you would test negative for celiac.

Can your medical notes from your previous home be requested?

 

[Ennis-TX]

Welcome to the forums,

Well, you have to be consuming gluten for it to show up in the blood test, at least a cracker or half a slice of bread for 12 weeks on the blood test or 2 weeks on the endoscope. Doubt you want to try a gluten challenge, it is where you try to consume that and then get tested for confirmation. After being gluten-free so long I imagine this would be really hard. But yes testing is normally done via a blood test and a full celiac panel checking for various antibodies to gluten, then the golden standard is to run a endoscope and take biopsies of the small intestine to check for villi damage.

I really do suggest finding another doctor who knows more about celiac disease, this one your seeing seems to not really care much or be very knowledgeable.

You might want to check for contamination in your house/surroundings if symptoms came back, you might have a shampoo, lotion, medicine, or food ingredient that is contaminated that you over looked. You should also see about getting checked for deficiencies, and talking to a dietician. Sounds like you might have a few and perhaps need to start a supplement regime to help out.

Here is the newbie 101 page to read over though you probably already got much of it down over the years. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

[Tiktea]

Thank you for your answer, advice and info. I am definitely changing my doctor.

[Tiktea]

On 2/23/2017 at 9:12 PM, Jmg said:

Hi. Thanks.  unfortunately I am not going to my county until next year. I will find another doctor because I can not wait more. 

 

[Mermaid's Mom]

On ‎2017‎-‎02‎-‎24 at 5:32 AM, Ennis_TX said:

Welcome to the forums,

Well, you have to be consuming gluten for it to show up in the blood test, at least a cracker or half a slice of bread for 12 weeks on the blood test or 2 weeks on the endoscope. Doubt you want to try a gluten challenge, it is where you try to consume that and then get tested for confirmation. After being gluten-free so long I imagine this would be really hard. But yes testing is normally done via a blood test and a full celiac panel checking for various antibodies to gluten, then the golden standard is to run a endoscope and take biopsies of the small intestine to check for villi damage.

I really do suggest finding another doctor who knows more about celiac disease, this one your seeing seems to not really care much or be very knowledgeable.

You might want to check for contamination in your house/surroundings if symptoms came back, you might have a shampoo, lotion, medicine, or food ingredient that is contaminated that you over looked. You should also see about getting checked for deficiencies, and talking to a dietician. Sounds like you might have a few and perhaps need to start a supplement regime to help out.

Here is the newbie 101 page to read over though you probably already got much of it down over the years. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

LOVE the Newbie 101 document!  One of the links is showing an error - the hidden sources of Gluten I think?  Does anyone have an active link to that?  Thanks!!

[Ennis-TX]

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/ 

https://www.celiac.com/articles/183/1/Additional-Things-to-Beware-of-to-Maintain-a-100-Gluten-Free-Diet/Page1.html

I know there was another of thinks like soaps, shampoos, and toothpaste but am unable to find the list myself. Thing is on products is they will almost always change something in the ingredients every few years. So you always have to read the labels in case they reformulate the recipe. I started sticking to only certain brands due to these reasons and once bitten by something I hold the company in bad regard like a kicked dog.

 

[squirmingitch]

2 hours ago, Mermaid's Mom said:

LOVE the Newbie 101 document!  One of the links is showing an error - the hidden sources of Gluten I think?  Does anyone have an active link to that?  Thanks!!

I think this is the link that wasn't working. Scroll down to pg 93 (you don't have to scroll through 93 pages to get there as it doesn't begin at page 1) to where it says "Cross Contamination". For sake of ease, I'm going to copy & paste what it says:

Open Original Shared Link

CROSS-CONTAMINATION

Cross-contamination is a challenge that faces the celiac patient everywhere—at home, while food shop- ping, and when dining out. The patient is counseled to eliminate potential cross-contamination as much as possible given the inevitable accidental exposure to gluten. When sharing a kitchen with individuals who eat gluten-based foods, the celiac patient should be careful to isolate all gluten-free foods. Separating butter sticks, margarine tubs, peanut butter and jelly containers will help to avoid accidental exposure to gluten through “double dipping.” Squeeze bottles for condiments such as ketchup, mustard and mayonnaise are recom- mended, as is frequent cleaning of counter tops, cut- ting boards and microwave walls. Colanders, strainers, 

wooden utensils and other cooking utensils where gluten can easily congeal should be kept separate. The celiac patient should have his/her own toaster oven. When shopping, avoiding bulk bins or purchasing from bins that only hold gluten-free products is important. 

Here's a link about Gluten Cross Contamination & eliminating it in your home ~~ what steps you need to take. It also covers subjects such as other people's houses and dining out.

Open Original Shared Link

Tiktea, you might want to read this:

Open Original Shared Link

I hope this helps!