Allergist recommendations? Anyone?

[Lotte18]

Hi all, I was diagnosed with Celiac at the end of January.  My condition seemed to be improving as I went gluten free.  Then I suddenly took a nose dive, (cross contamination perhaps), and I can't get back on track.  At this point I feel like I'm starving.  I keep reading that allergy food blood testing can help.  Does anyone have an allergist in NYC that they can recommend?  You'd think in a city this big there must be someone!  

Any help much appreciated. 

[Scott Adams]

Are you by chance eating oats? Around 10% of celiacs cannot tolerate oats, even if they are gluten-free oats.

Also, have you tried eliminating dairy?

[Lotte18]

4 hours ago, Scott Adams said:

Are you by chance eating oats? Around 10% of celiacs cannot tolerate oats, even if they are gluten-free oats.

Also, have you tried eliminating dairy?

Hi Scott,

I'm avoiding all oats and have limited diary intake to a little butter and hard boiled eggs.  My only source of sugar is a spoonful of honey on my cream of rice cereal, (B&G).  Waiting for results of a TTG test I took on Friday.  

 

[Scott Adams]

Are you taking the test to see where your current antibody levels stand, perhaps to see if you are getting gluten in your diet? The test isn't really designed for that, but follow up tests can be helpful to see if your levels are dropping, which they should be.

Do you eat outside your home? This is another common source of contamination.

 

[Lotte18]

 

1 hour ago, Scott Adams said:

Are you taking the test to see where your current antibody levels stand, perhaps to see if you are getting gluten in your diet? The test isn't really designed for that, but follow up tests can be helpful to see if your levels are dropping, which they should be.

Do you eat outside your home? This is another common source of contamination.

 

Hi Scott,

Just got off the phone with my new Allergist.  My antibody levels have gone down from 27 to 10.6.  So they have dropped but not disappeared.  He's going to test for problems with rice.  Since cutting out wheat, I'm eating lots of rice and rice based crackers, cereal.  In answer to your other question, I don't eat out at all.  ;(.  

[Scott Adams]

That is a big drop for just a few months, so you are on the right track. Rice should not elevate your TTG or other gliadin antibody levels, and is safe for celiacs.

[CMCM]

My son has a quite severe peanut allergy, which we discovered when he was 3.  Also tree nuts and variety of other things, and who know what else.  He underwent a lot of allergy testing when he was young, including the usual skin prick panel as well as a delayed reaction type blood test.  One thing we were advised at the time was that with potentially or known allergen food, you shouldn't eat those foods daily.  At the time, they suggested repeating such a food only every 4 or 5 days.

[Lotte18]

50 minutes ago, CMCM said:

My son has a quite severe peanut allergy, which we discovered when he was 3.  Also tree nuts and variety of other things, and who know what else.  He underwent a lot of allergy testing when he was young, including the usual skin prick panel as well as a delayed reaction type blood test.  One thing we were advised at the time was that with potentially or known allergen food, you shouldn't eat those foods daily.  At the time, they suggested repeating such a food only every 4 or 5 days.

Hi CMCM,

It's hard enough being an adult dealing with this stuff.  My heart really goes out to parents and kids slogging through this minefield.  I will keep your advice in mind as I go through this weird process of elimination, or is it whack-a-mole?!  

[Lotte18]

2 hours ago, Scott Adams said:

That is a big drop for just a few months, so you are on the right track. Rice should not elevate your TTG or other gliadin antibody levels, and is safe for celiacs.

I'm encouraged that you consider it a big drop!  I'm such a newbie, I thought I was failing.  However, if rice, as you say isn't the culprit, I don't know what to think.  But maybe I've just been overdoing it?  I will get the blood test tomorrow and in a few days report the results.  If negative, you have carte blanche for a big I-told-you-so!  

[Kate333]

Hi Lotte.  Welcome.  I can sympathize.   I have all kinds of allergies (I live in a large Northern Calif. city), including especially dust and, post-celiac disease diagnosis, dairy.  I constantly sneeze, eyes run, congestion, but find it honestly hard to discern whether my symptoms are due to food or dust, air pollution, pollen etc.  I did get a food allergy blood test panel but I understand those tests are not very accurate or reliable.  Probably cheaper to do an elimination diet and try to carefully track which foods you react to.   I also felt hungry all the time right after diagnosis.  Likely because I was so fearful about eating that I think I subconsciously cut back on the amount of food I consumed.   

Don't get discouraged about adapting to the new gluten-free diet.  It took me months to figure out all the nuances of how G is so widely used and "hidden" in so many processed foods as fillers, many times listed as weird ingredient names.  I ditched restaurants after they all closed during the CV quarantine (I have no interest in returning to them because cc is a huge issue and big risk, despite companies touting gluten-free menus).  After that, I couldn't handle the stress/hassle of constant label-reading, so I just simplified my life by buying, cooking and eating only fresh meat, veggies and fruit.  After that, my blood G antibodies started rapidly dropping.  BTW, your TTG #s are great!  As long as they are below 14, you are golden, because that is the normal range.  I started from a high of 224 (before diagnosis) to nearly 28 this past January and hope to get to 14 or lower by the summer.🤞

A word of caution about rice.  Make sure you buy only rice with a "certified gluten-free" label on the box.   I wouldn't get it from an open or shared grain bin at the store.  Minute Rice is a good gluten-free brand.  I've tried it on occasion and never had problems with it (other than weight gain from eating too many simple carbs).

Good luck on your healing journey!       

[Lotte18]

Hi Kate,  Thank you so much for your post.  You give me hope!  Your progress from 224 to 28 is truly impressive.  I can't fathom how you kept yourself fed while you were doing the eliminations.  As you say it's really hard to discern the causal relations between what you eat and your symptoms.  I don't seem to react right away.  There's a lag time so I just can't put my finger on what is causing a specific symptom.  While I don't get the full blown rash that many people suffer, I still get inflammation spots that come and go.  My overall complexion is often way too red.  Sometimes I just think I'm not getting enough nutrients, ie iron.  And then I get intestinal pain.  That's the worst.  Far from golden, lol!  At least since going gluten-free I no longer have any stomach acid problems.  Acute gastritis is what drove me to the doctor in the first place.

I grew up in SF and I remember my mother having exactly the same allergies you describe.  She was constantly taking anti-histamines.   The climate then was cold and damp with very little pollution.  I think she also had Celiac but was never diagnosed.  Another issue was probably Vit. D.  Like her, I instantly feel better if I'm sitting in the sun.  At least we have Spring and summer to look forward to.  I will keep my fingers crossed for your #14!

 

[Kate333]

13 hours ago, Lotte18 said:

Hi Kate,  Thank you so much for your post.  You give me hope!  Your progress from 224 to 28 is truly impressive.  I can't fathom how you kept yourself fed while you were doing the eliminations.  As you say it's really hard to discern the causal relations between what you eat and your symptoms.  I don't seem to react right away.  There's a lag time so I just can't put my finger on what is causing a specific symptom.  While I don't get the full blown rash that many people suffer, I still get inflammation spots that come and go.  My overall complexion is often way too red.  Sometimes I just think I'm not getting enough nutrients, ie iron.  And then I get intestinal pain.  That's the worst.  Far from golden, lol!  At least since going gluten-free I no longer have any stomach acid problems.  Acute gastritis is what drove me to the doctor in the first place.

I grew up in SF and I remember my mother having exactly the same allergies you describe.  She was constantly taking anti-histamines.   The climate then was cold and damp with very little pollution.  I think she also had Celiac but was never diagnosed.  Another issue was probably Vit. D.  Like her, I instantly feel better if I'm sitting in the sun.  At least we have Spring and summer to look forward to.  I will keep my fingers crossed for your #14!

 

Hi again Lotte18,  

Wow.  Small world!  Thanks for the kind words.  Sorry for your tummy aches and skin inflammation.  If your TTG # is as low as 10, that is well within the normal range, so you might consider other, non-G sources of those symptoms, esp. chronic anxiety/stress, which often triggers or intensifies a ton of PHYSICAL symptoms, including digestion probs/IBS, stomach aches, allergies, and eczema/hives flareups.  (A great website that explains the brain-body connection in more detail (as well as great coping tips) is anxietycentre.com.) You're lucky you have no more acid reflux issues.  I find that mine has gone through the roof in the past year--probably also stress-related. Gluten aside, God knows we all have dealt with TONS of stress over the past pandemic year!😢  Here's to hoping/praying that the summer will be better for all of us!🤞  

[Melissa93]

Did you find an allergist? I live in NYC as well and just met with an allergist/immunologist last week.

 

I got diagnosed this November and also new to the game, I realized that quite some naturally gluten free produce I had in my house still had cross-contamination (basically everything from whole foods). I order my beans, seeds, nuts, grains and legumes from nuts.com that have a really strict gluten free policy. You can shop online on their gluten free sectioin. I struggle with getting response from really little things as well, even products that are labelled certified gluten free. It's super frustrating, and in my case I don't think it's from gluten but something else I respond to. I've just decided for now to eat really 'clean', so just like veggies, fruits, legumes and nuts all day basically. I'm meeting a nutritionist soon, and have an endoscopy planned to also see if I have gastritis. Hope this helps!

[Lotte18]

Hi Melissa,

 I did find an allergist-- Dr. Joshua Grossman at NY Allergy & Sinus.  We've only had a video visit so far.  As you may have read, he thinks I may have developed an allergy to rice.  As you know, once you quit gluten you end up with bread, cereal and crackers that are usually rice flour based.  I was also eating it as is with dinner.  This is day 2 without it and I confess I do feel better.  

I have avoided the bulk bins at Whole Foods but I may have gotten some cross contamination from prepackaged nuts at a smaller grocers.  My GI's secretary later advised me that nuts, beans and raw foods, ie salads and fruits are not easily digested.  So I've been on the bland and cooked, clean diet.  Not fun.  Good to know that you've had luck with nuts.com.  I dream of having salad drizzled with pumpkin and sunflower seeds again!  

I had to have my endoscopy/colonoscopy at the height of one of our many Covid surges.  So stressful.  If you happen to be with Weill Cornell/Columbia etc.etc.,  I would urge you to insist that they book you into the new David Koch building and not the old main hospital across the street.  The Koch building has huge rooms with high ceilings for decent ventilation.  Everything is clean, new, and quiet.

Once you have it done you will have a definitive answer and you can proceed from there.  At least that's something.  Keep us all posted!

[Melissa93]

2 hours ago, Lotte18 said:

Hi Melissa,

 I did find an allergist-- Dr. Joshua Grossman at NY Allergy & Sinus.  We've only had a video visit so far.  As you may have read, he thinks I may have developed an allergy to rice.  As you know, once you quit gluten you end up with bread, cereal and crackers that are usually rice flour based.  I was also eating it as is with dinner.  This is day 2 without it and I confess I do feel better.  

I have avoided the bulk bins at Whole Foods but I may have gotten some cross contamination from prepackaged nuts at a smaller grocers.  My GI's secretary later advised me that nuts, beans and raw foods, ie salads and fruits are not easily digested.  So I've been on the bland and cooked, clean diet.  Not fun.  Good to know that you've had luck with nuts.com.  I dream of having salad drizzled with pumpkin and sunflower seeds again!  

I had to have my endoscopy/colonoscopy at the height of one of our many Covid surges.  So stressful.  If you happen to be with Weill Cornell/Columbia etc.etc.,  I would urge you to insist that they book you into the new David Koch building and not the old main hospital across the street.  The Koch building has huge rooms with high ceilings for decent ventilation.  Everything is clean, new, and quiet.

Once you have it done you will have a definitive answer and you can proceed from there.  At least that's something.  Keep us all posted!

Sounds stressful if you would be allergic to rice, it's definitely in a lot of processed foods at least that are gluten-free. I find myself reacting very heavily on sourghum and millet, which was hard in the beginning with trying to find a gluten free bread and cookies etc. 

 

I've definitely had trouble in the past with digesting raw nuts and raw veggies as well, but as my TTG levels have dropped I can definitely take on a lot more than before. So hopefully there is hope for you too!

 

Thanks for the advice on the practice! I'm actually getting my scope done through NYU, but I totally get your pain. They skipped my diagnosis biopty because of the pandemic, but as my levels were very confincing I just got my diagnosis through my blood, symptoms and vitamin deficiencies etc (and family history). They're now just doing an endoscopy to see how my villi look and my stomach, happy when it's done.

[Lotte18]

Just out of curiosity, what bread do you buy?  Crackers?

When this whole thing started I had to get an abdominal ultrasound at NYU Langone.  They had a special air purification system in the room.  Felt really safe there.  You will be in good hands.  Hope your villi have responded well to all your efforts!  

[Melissa93]

20 minutes ago, Lotte18 said:

Just out of curiosity, what bread do you buy?  Crackers?

When this whole thing started I had to get an abdominal ultrasound at NYU Langone.  They had a special air purification system in the room.  Felt really safe there.  You will be in good hands.  Hope your villi have responded well to all your efforts!  

I buy whole foods gluten free white bread, because it's the only bread I've found so far withouth sourghum or millet. But I usually just prep lunch once a week making lentils, roasted sweet potato, beets, or frittata with like broccoli, leak, peas, collard greens and cook up some fresh green veggies every day. Hoping that I can tolerate at least millet again at some point, as I like prefer that over tons of starch. 

I am quite carefull with shopping at whole foods, only buy fresh produce or otherwise things that are certified gluten-free, as I called them about a couple of staples like coconut oil, prepacked quinoa and prepacked cane sugar and it was all not gluten free, while NOT stating on the package that it was produced in a facility with wheat. Very frustrating, they are literally the worst with allergens.

[Lotte18]

If you feel like switching from WF's bread, 3 Bakers' bread is Certified gluten-free and does not have sorghum or millet.  Just found Simple Mills Almond flour crackers--grain free, Certified gluten-free.  Delicious but very salty.  Tomorrow I'm going to try some Pocono buckwheat hot cereal.  It's not certified but they say they follow very strict gluten-free practices.  Other people on the site have mentioned it as safe. 

[Scott Adams]

If you are looking for super healthy whole grain bread this company makes some excellent choices:

https://www.grindstonebakery.com

[Lotte18]

7 minutes ago, Scott Adams said:

If you are looking for super healthy whole grain bread this company makes some excellent choices:

https://www.grindstonebakery.com

Just checked their site.  The bread looks delicious, pricey, but delicious.  However, I don't think it's available on the East Coast.  The Farmer's Market in Union Square is supposed to have a great gluten-free baker.  I just haven't gotten there since the pandemic.

[Lotte18]

Hi again,

Just wondering if you know whether Ancient Harvest's Quinoa cereal is safe.  Doesn't seem to be certified-- but neither is Pocono buckwheat cereal and I've been eating that with no issues.  

Thanks for all your help!

[Scott Adams]

Ancient Harvest Quinoa products are gluten-free, and at least back when Dave Schnorr owned the company all of the Quinoa was directly from the high Andes in Peru and Ecuador (I believe), where no wheat is grown or processed. 

[Lotte18]

Good to know!  Thank you so much Scott.

[Lotte18]

Hi Scott,

Ancient Harvest Quinoa for breakfast.  So much lighter than buckwheat.  And yes, seems it still comes from the high Andes.  Thanks for the reassurance on the GFness.

On a different note...I'm wondering if gluten wears down intestinal villi in patches...like the high traffic areas of a carpet?  Or is the destruction universal?  And if as I understand it, dairy is the first to wear down, (top of the villi), what are the other food stages?  What's the first food that recovers?  Is there a chart somewhere?

As always, your help is much needed and much appreciated!

 

 

[Scott Adams]

The destruction varies from person to person, which makes it harder to detect using endoscopy. Some people just have small patches, while others have vast areas that have been affected.