Celiac Nutritionist

I know there has been a lot of suggestions to go and talk to you doctor already - so I am on repeat - to get the best / accurate results - gluten should be eaten prior to the scope being done. 

I hope that you can get/ or already have been able to get the appointment bumped up  - keep calling the doctors office and keep pressing them to move your appointment closer - I have appointments move up many times! 

Hi, Lacey.   

Sounds like you have tried  a lot.   I just read the post that you have tried some of Dr. Axe's suggestions - that is great to see that they are helping!  

Have you done any specific work before with any of the other practitioners to specifically heal the gut?   

Keep us posted on the Dr. Axe protocol and don't hesitate to reach out if you have any Q's! 

O I feel your Migraine pain!  That was my one and only symptoms for YEARS and YEARS..... until one day finally it all turned into tummy problems and joint issues, (the list goes on and on...)  

Often you will notice your "main" symptom/s appear pretty soon after eating gluten (some its minutes, others its a day or so..). 

Following the proper diet strictly you should be able to drastically reduce those pains in head. 

Vitamin deficiency isn't likely to happen after one episode of being glutened - it is usually accumulative of your body not being able to absorb the nutrients (because of the damage done by gluten over time). 

Have you had your vitamin levels currently checked?  (Bringing certain vitamins / minerals back into balance can help alleviate the migraines faster!) 

How scary to watch your child go through what you have seen. 

I wish you huge luck with both biopsies.     

In urge before you and your daughter go gluten free - celiac can also be "silent" - and it is very common and normal to run in direct relatives- I would HIGHLY RECOMMEND you and your other children (even your spouse) seeking appropriate testing BEFORE going on a gluten free diet in support!  

I was 17 when I was diagnosed - and although your son is feeling the way he is, and it will be an adjustment period, he will figure out how to eat with and do normal things with his friends. 

Let us know how the biopsies go! 

I thought this would be a good resource for the newly diagnosed! 

What were the first celiac/ gluten free related pages you joined on Face book after being diagnosed???

On 2010-04-02 at 0:50 PM, JNBunnie1 said:

Thanks! I'm thinking about working as a gluten free transition helper, personal chef, and trainer for new people on the diet, and your feedback will help me very much to know if anyone would be interested.

Hi! I would LOVE to discuss this with  you and see if anything ever came of it!  (Being 6 years later, I wonder how things have changed...?)

Hi, Sterling.

If it's possible - try and find out through your reports if there is ANY percentage of villi atrophy.    Glad you are seeing a gluten consultant, is it at one of the celiac centres?

13 hours ago, CherylS said:

I read the report of the colonoscopy.  It says "localized nodularity was noted in the cecum. Multiple cold forceps biopsies were performed for histology."  I'm trying to remain calm, but of course my brain goes to colon cancer.  She said there were no polyps, which gives me a little hope that I'm fine.  I think she probably wants to do the capsule endoscopy to look at my small intestine, especially the ileum since it's right next to the cecum.

The weirdest thing to me is that she told me that she didn't see anything on either procedure.  The EGD report talks about the ectopic pancreas and the colonoscopy talked about diverticulosis and the nodularity in the cecum.  I would think if you had to biopsy something and want further imaging it warrants telling the patient that you saw something potentially wrong.

I'm a nurse and know that diverticulosis isn't anything to be concerned about, so I'm not worried about that.

I'm waiting for insurance approval for capsule endoscopy.

When you are in the field, your mind always goes to the worst because you "know to much" - use your knowledge to research and logically think things through (which is super crazy difficult to do when its ourselves).    That is not very cool that she said she didnt see "anything"  - but maybe nothing of "concern" to her means nothing?       I hope your insurance comes through soon - any idea how long that will take for you?

8 hours ago, Pauliewog said:

I use tea bags all the time from various companies without worry. The only teas I worry about are those that are flavored like holiday blends. I have seen barley in those.

As far as green tea goes, I highly recommend the Ito-en Ryokucha Premium Green tea matcha blend. It has leaf and a little matcha in it. It is by far the best green I have had. It just steeps in water for 30 seconds (longer it becomes bitter). Not sure if it is found locally but Amazon has it:

Open Original Shared Link

That Tea blend sounds great     I would caution that the Match may have the opposite effect of what we sometimes want green tea for (to calm and chill out with!) - Matcha can be quite stimulating!

Green Tea is amazing for a ton of things. For joints it can help to bring down inflammation in the joints. 

Whatever brand you decide on, you can always call and ask questions about processing, if it comes into contact with anything that contains gluten etc.  

My rule is if it started with gluten or gluten in it - avoid it!  Glad to see this labeling coming down the line.

I have spoken with New Chapter on this topic a lot, and unfortunately I love them but can not recommend them from anyone with Celiac Disease- You are best to avoid anything grown or fermented on wheat (although the fermentation process minimizes the amount of gluten drastically).

Quinoa is generally recommended as safe, although some celiacs have reacted in various ways. 

Take note if you try it and notice any symptoms.

Kendra

Do you have a good high speed blender, you can try and make a version of it at home!  (Free of all the extra crap!) 

I LOVE home made almond and coconut milk also  

For Quinoa milk:

Cook Quinoa

Use one cup quinoa and 2-3 cups water, add 1-4 medjool dates, a pinch of himalayan salt, and cinnamon!

BLEND.

You can chose to leave as is, or strain through a cheese cloth or nut milk sack.

Hope you enjoy!

Kendra

Do you have a copy of your pathology biopsy report?        

Yes?   What exactly does it state?     (ie: does it have any atrophy or duodenitis stated on the report?)

No? - Ask your doctor for a copy.

Is the pathologist unfamiliar with Celiac Disease? (this could potentially effect the results).

They need to have taken at least 4-6 samples for accuracy.    Many GI don't know this yet and only take one or two.

Question both your Gastroenterologist and the pathologist to ensure that they are both familiar with Celiac disease.

To respond to your question about if its still possible... maybe yes.   If enough samples were not taken, it will not give you accurate results.

Also, they may not have shown "enough" damage yet to be "classified" as Celiac.

-When you get your reports back (always always take a copy home for your own file!)  check to see if they say anything like "mild Villus atrophy" or "non specific duodenities"

Hope that helps!

Kendra

Can you post a copy of the report?

Were you diagnosed with DH?

Have you started a gluten free diet to see if your symptoms clear up?

Awesome news!  Let us know what your results are like!

This is just a guess about the capsule endoscopy -  but he might want to see if anything else is missing/ out of place / everything is functioning how he things it should be.  

Did they schedule one already or are they waiting for the results of the first one? 

39 minutes ago, StephanieL said:

1) Oat's are not a gluten containing grain but often comes in cross contact with gluten.  They may use gluten free oat grass. I don't know.

2) Gluten is NOT considered one of the Top 8 allergens in the US.  Wheat would been to be listed, rye and barley (and oats that come into cross contact with gluten grains) do not need to be listed.

 

Gluten free is wheat free. Wheat free/allergy free/friendly is not necessarily gluten free. 

A lot of people with Celiac still react and have symptoms after consuming even certified gluten free oats  (they still usually contain up to 20ppm of gluten - which is enough to trigger issues in some of us - myself including).     

Hey, Molly 

My recommendation is to always contact companies - so that is awesome that you have done so! Unfortunately it is pretty common for someone in the positions of replying back to customers to not know the answers correctly the first time and there for we need to push a little harder.    

If you can, try and choose products that have a certified gluten free label - it is usually a safer bet  (especially regarding teas - I have found all sorts of narly ingredients in teas you would never expect to be glutened on).

This is the biggest risk with self-diagnosing - that once you start to feel better and then you have a few things come up you wonder if you were wrong.  

What exactly is the pain like and how long does it last for?

Had you seen a dr. around that the time your were first having pains?  If so - maybe they have some blood work results that you could discuss with them to see if you have markers.

You could also try for the genetic testing before proceeding with anything else.    It could be quite likely that you body really does respond to gluten in a celiac manner if you have the markers - and you could view that is your solid line to not cross into the gluten containing food again.

Do you have  Dr. that you can discuss testing with for the genetic markers?   

(If you are in fact celiac and you go back on gluten - that is also risky  - some people will have elevated blood work quite quickly, and others could take months or years but not feel well in the process.) 

Crissy,  are the bumps like little blisters?  Have you had a chance to read about some DH?       

Although common for DH patients to test negatively on Celiac tests, they should still avoid gluten entirely.

Just to clarify then, you have not been diagnosed with Celiac then?   (referring to the ER dr. running tests - or have you previously been diagnosed?)

Try cutting out all grains (even gluten-free) and processed foods for 7-10 days (or if you can handle it, a few weeks!) and see if you notice a difference.  When you re-introduce the grains, record what you eat so you can look back to see if anything particularly "triggered" it.  

Sorry to hear about all your itching!   Your body sounds like it may be having a histamine response to something(hives etc.)....   The histamine response can be increased / much more irritating if you are even slightly dehydrated.

So drink up!  (2-3 litres a day- and see if anything changes!)

When you first went gluten free was the itching the only reason, or what led you to taking gluten out of your diet before diagnosis?

Is your son on any current supplementation?   (vitamins / probiotics/nutriceuticals/ pharmaceuticals?)  - And do you know of any other already diagnosed health issues? 

Dry skin  (especially with Celiac Disease) can often be indicative of still not absorbing enough Essential Fatty Acids (or not getting enough in the diet to absorb), and or Thyroid imbalances.   

When  I was growing up, that is exactly how I described my tummy (before diagnoses).  Try starting a food diary, and record what your son eats, when he notices the bloating and the flatulence and see if you notice any "triggers".  (Ie: if he is Lactose intolerant, is he eating gluten free pizza with cheese - does he notice these symptoms within hours or within 24 hours of consumption? )      

If someone removes Gluten before testing is done, they are at high risk for false test results.    I wish you luck, I know it will be be hard for an additional month.  

Have you spoken with you parents?   Let them know if you have not, and please do see a doctor for proper diagnosis.