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ButWhatCanIEat

Newb Celiac/G Sensitive here

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I'm in the middle of being diagnosed, and I feel like a bomb has gone off in my life.
Background: I have been having a number of health problems including fibroids. I was anemic and they thought there was an obvious cause but some things I said made my OB GYN send me to the gastroenterologist. She asked me a bunch of questions then tested me for H Pylori and celiac. I literally laughed when she told me about the celiac test, ok?

So it came back "mild to moderate positive", 34 when it should be under 20 apparently. I'm waiting for my endoscopy to see how serious it is I suppose.

She had some confusing things to say, one was "eat a gluten free diet" but 2 was "but don't for a week or two before the endoscopy" and I don't know when it will be. So I haven't really gone gluten-free yet, just trying to come up with menus.

I already have a limited diet, kosher, vegetarian and lactose free. I feel like I have nothing left to eat! But upon reviewing signs and symptoms of celiac it does fit with weird health problems I have been having for years. I am 48, almost 49. Can you get better at this age?

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5 minutes ago, ButWhatCanIEat said:

I'm in the middle of being diagnosed, and I feel like a bomb has gone off in my life.
Background: I have been having a number of health problems including fibroids. I was anemic and they thought there was an obvious cause but some things I said made my OB GYN send me to the gastroenterologist. She asked me a bunch of questions then tested me for H Pylori and celiac. I literally laughed when she told me about the celiac test, ok?

So it came back "mild to moderate positive", 34 when it should be under 20 apparently. I'm waiting for my endoscopy to see how serious it is I suppose.

She had some confusing things to say, one was "eat a gluten free diet" but 2 was "but don't for a week or two before the endoscopy" and I don't know when it will be. So I haven't really gone gluten-free yet, just trying to come up with menus.

I already have a limited diet, kosher, vegetarian and lactose free. I feel like I have nothing left to eat! But upon reviewing signs and symptoms of celiac it does fit with weird health problems I have been having for years. I am 48, almost 49. Can you get better at this age?

Sure, some of us like Scott, the board owner are even older than that! :)  Sometimes you can hear the forum creaking when he types a response.  Really! :)

Joking.  Yes, you can certainly recover at 49.  For the endoscopy they want at least 2 weeks of eating gluten before it.  That's enough time to show the type of gut damage that celiac can cause.  During the endoscopy they usually take 4 to 6 small biopsy samples for lab review under a microscope.  So it can take week or 2 to get the results.

I am not surprised you are lactose free.  Celiac disease damages the villi lining the inside of the small intestine.  Those villi make an enzyme called lactase that digests dairy sugar (lactose).  So celiac people tend to be lactose intolerant from the damage.  That may change after healing.

You should ask your doctor for a vitamin and mineral levels tests.  We can have multiple symptoms from various deficiencies.

I'd talk to the GI and ask when they think the endoscopy will be.  If it's soon then I suggest staying on gluten until it's over.  People who stop eating gluten and then start eating it again for the endoscopy (gluten challenge) seem to have worse symptoms than before they stopped gluten.  It's not easy to do a gluten challenge for most of us.

Welcome to the forum! :)

 

 


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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Thanks. I'm already anemic which is what caused her to test for celiac in the first place along with a few other symptoms. I've had severe vit D deficiency in the past, I don't think they have checked again lately. I assumed then it was because I had been living up north and didn't drink milk (fortified with D). Now it's just one of my many aha moments, like lifelong migraines.

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I wasn't diagnosed until my early 50s and have found healing. Certainly you can. There are still many things you can eat and the best part is you will find yourself switching over to eating more fresh foods and less processed foods, thus healthier eating. It will put a severe limit on eating out in restaurants and at other people's houses unless they are willing to work with you in planning the meals or unless you bring your own. It will take a while to learn the ropes of avoiding gluten once you do commit to eating gluten-free.

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You should likely keep eating gluten until all testing has been completed, so I am not sure why there is a mixed message about that, but perhaps you can push them to speed up the endoscopy date? Also, you said:

Quote

So it came back "mild to moderate positive", 34 when it should be under 20 apparently. I'm waiting for my endoscopy to see how serious it is I suppose.

But if 20 is the cut off for a positive celiac disease test, and you scored 34, I would not classify this as a mild to moderate positive. It looks like a strong positive to me, especially given you history of anemia and vitamin D deficiency, which are probably the most common symptoms detected in regular blood checks.

We've seen people in their 70's get diagnosed and their health has improved greatly after going GF, so it's never too late! 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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6 hours ago, GFinDC said:

Sure, some of us like Scott, the board owner are even older than that! :)  Sometimes you can hear the forum creaking when he types a response.  Really! :)

Joking.  Yes, you can certainly recover at 49.  For the endoscopy they want at least 2 weeks of eating gluten before it.  That's enough time to show the type of gut damage that celiac can cause.  During the endoscopy they usually take 4 to 6 small biopsy samples for lab review under a microscope.  So it can take week or 2 to get the results.

I am not surprised you are lactose free.  Celiac disease damages the villi lining the inside of the small intestine.  Those villi make an enzyme called lactase that digests dairy sugar (lactose).  So celiac people tend to be lactose intolerant from the damage.  That may change after healing.

You should ask your doctor for a vitamin and mineral levels tests.  We can have multiple symptoms from various deficiencies.

I'd talk to the GI and ask when they think the endoscopy will be.  If it's soon then I suggest staying on gluten until it's over.  People who stop eating gluten and then start eating it again for the endoscopy (gluten challenge) seem to have worse symptoms than before they stopped gluten.  It's not easy to do a gluten challenge for most of us.

Welcome to the forum! :)

 

 

People who stop eating gluten and then start eating it again for the endoscopy (gluten challenge) seem to have worse symptoms than before they stopped gluten. 

Yes! I can attest to this. Not fun!

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6 hours ago, ButWhatCanIEat said:

Thanks. I'm already anemic which is what caused her to test for celiac in the first place along with a few other symptoms. I've had severe vit D deficiency in the past, I don't think they have checked again lately. I assumed then it was because I had been living up north and didn't drink milk (fortified with D). Now it's just one of my many aha moments, like lifelong migraines.

I too was Vitamin D deficient. I have a past history of some small uterine fibroids, my OB/GYN found during my son's C-section, but did not feel required any action at the time. I also had fibroadenomas  of the breast as well. 

 

Vitamin D status and fibroids

 https://pubmed.ncbi.nlm.nih.gov/26079694/

 

 

 

 

Edited by Awol cast iron stomach
Added update

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10 hours ago, ButWhatCanIEat said:

I'm in the middle of being diagnosed, and I feel like a bomb has gone off in my life.

I can so relate to this sentiment.  I feel the SAME way.  When I was diagnosed late last year, my blood test was over 200 and many others here reported much higher scores.  So if your reading is "only" 34, you should take some comfort in knowing your test results will likely quickly return to the normal range on a strict gluten-free diet.

I really wish I could assure you that the emotional journey and "adapting" to an entirely new relationship with food (and, while I heal, having to avoid so many seemingly innocent, non-gluten foods I used to easily digest) gets easier.  But, honestly, in many ways this has been the toughest year of my adult life. I am often still very depressed about this "condition" (despite my numbers rapidly plunging in response to a gluten-free diet and having a wonderful, compassionate GI doc who always promptly responds with kind reassurance to my many email Qs).  Perhaps it just feels so overwhelming and hopeless because this pandemic happened so soon after my diagnosis.    

Here's to hoping 2021 is a much better year for all of us!!

 

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On 12/18/2020 at 2:31 PM, Awol cast iron stomach said:

People who stop eating gluten and then start eating it again for the endoscopy (gluten challenge) seem to have worse symptoms than before they stopped gluten. 

Yes! I can attest to this. Not fun!

If you’ve been diagnosed with Celiac, why would you eat gluten for a test? 

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