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Pre-diagnosis Anxiety (and A Few Questions)
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Hello everyone!

I'm a 21- year-old female who has exhibited many of the symptoms of celiac disease for the past five months. I have had an upper GI, countless blood tests (one of which caused me to pass out), a gallbladder untrasound, an X-Ray, and a stool card test (I never got the results on that one!). All of those tests were normal except for the final bloodwork I had done in June showing gluten antibodies. I have an EGD on Aug. 4th, and I'm not looking forward to being sedated while I swallowed a pencil-sized tube. :unsure:

The Gluten-Free diet has helped, though. :) Before I went on the diet, I was constantly vomiting, in an almost reflexive manner, without any warning. I would simply be eating, feel fine, then suddenly become nauseated. Now I can keep food down and am enjoying the new meals.

I have a few questions and appreciate any advice from anyone.

-How long does it take for the fatigue to go away after starting the Gluten-Free diet? Is it a few weeks, months, etc.?

-Have any of you "not felt like yourself" before going on the diet? Did you have depression/anxiety or difficulty sleeping prior to diagnosis?

-Did you exhibit symptoms after a stressful event? (I'm a college student-I became sick before finals week)

-Can a person be healthy their entire lives and suddenly get Celiac's Diseasee as an adult?

I have tons of other questions, but I figured these are the biggest.

Thank you very much.

~Jill

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Hi and welcome to the forum!

I'm another 21 year-old female and was just diagnosed about 1 year ago, so it is definitely possible to be healthy your entire childhood and only begin experiencing symptoms as an adult. To answer your other questions:

-The amount of time it takes for fatigue to disappear on the gluten-free diet varies a lot from person to person. Some people say they feel like a whole new person in just a couple of days, while other people do not begin feeling better for a few weeks or maybe even a few months. For me it took about three weeks for my GI symptoms (reflux, bloating, constipation) to subside and around 2-3 months for the fatigue to go away. One way to make the fatigue go away sooner is to make sure you are eating a balanced diet. You may even want to look into taking a multivitamin because most gluten-free foods are not fortified, and you want to make sure you don't end up with any vitamin/mineral deficiencies that could lead to sleepiness.

-I was totally not myself prior to diagnosis. I was tired all the time (very unusual for me), irritable, and depressed. As I said before, it was a few months before the tiredness went away. However, the irritability and depression went away as soon as I was diagnosed b/c I was so happy that I finally knew what was causing all of my symptoms (and that my symptoms were NOT just all in my head).

-I had my symptoms about 1 year before I was diagnosed with Celiac disease. The symptoms started while I was doing a study abroad program in Germany, which was a ton of fun and very worthwhile, but also quite stressful b/c I was living in a small town that didn't otherwise see a lot of foreigners, so I always felt like people were making judgements about America based on how I acted. When I came back, I experienced some brief symptom relief, but then my symptoms began to come back and were at their worst during finals week of my Fall and Spring terms. So it definitely seems like stress can be a factor!

Okay, I think I answered all of your questions. Please feel free to e-mail me if you have any more. I'm so glad to hear that the gluten-free diet is helping :D !

~Wish

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If you are on the gluten-free diet now go back to eating gluten before your endoscopy.

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-How long does it take for the fatigue to go away after starting the Gluten-Free diet? Is it a few weeks, months, etc.?

-Have any of you "not felt like yourself" before going on the diet? Did you have depression/anxiety or difficulty sleeping prior to diagnosis?

-Did you exhibit symptoms after a stressful event? (I'm a college student-I became sick before finals week)

-Can a person be healthy their entire lives and suddenly get Celiac's Diseasee as an adult?

Fatigue: It took me a few weeks, but I don't think I'd been gluten-intolerant very long. Turns out, for me, part of the fatigue problem is low testosterone levels, and that is even more important than the gluten-free diet for keeping me from getting tired. (Though they both play a role.) I know some people take MUCH longer to see an improvement in this area, particularly if they had been sick long enough to have vitamin/mineral deficiency problems.

"Not like yourself": Sorta. For me, I discovered it through another condition I had, which makes it pretty hard for me to answer the question - as that condition has much more of a depressive effect than this one for some people.

Stressful event: Do you mean did I first exhibit symptoms after a stressful event? Since my symptoms are relatively mild, and I have other issues, I can't pin down when my symptoms started. It may have been related to a nine-month off and on bout with lung infections (and hence antibiotics and yeast infections) that triggered this problem.

Sudden onset: Yep. That's the idea. You can have the genes for gluten intolerance, but until they're triggered, and expressed, your body doesn't react to gluten. I've heard that stress, infection (particularly yeast), and other things can be the trigger.

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Thanks everyone for answering my questions! Wish, I'm glad to hear from someone whose experience was sismilar to mine--I'll email you anytime! I really appreciate your imput--it's hard to describe the more emotional/mental aspects of the condition to my family--but they do understand the physiology of what's going on.

I'll talk to the nutritionalist I'm seeing next week about hormonal levels, namely testosterone. (hahaha he's male---he'll understand. Just kidding!)

Thanks again everyone!!!!

~Jill

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Hi Jill,

If you are already gluten free, then your biopsy will most likely show negative. The lining of the intestines heals pretty quickly for most people. Only people with very severe damage take longer than a few weeks for the lining to heal to the point of not being considered Celiac during a biopsy.

I felt so much better being gluten-free, but went back on gluten for two months and my biopsy still showed negative. You might want to talk to the doctor about it before going through the procedure for nothing.

God bless,

Mariann

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Mariann,

You've made a good point--I read somewhere on this forum that someone's doctor asked them to ingest gluten before the test so the reading was more accurate. Would that help me?

What other condition would I have if antibodies showed up but my test was negative?

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after having bloodwork done, doctors will want you to stay on gluten so that your biopsy results are accurate. Therefore, I knew I had celiac disease after bloodwork, but stayed on gluten until after the biopsy....if I had gone off gluten, the biopsy may not have shown celiac disease or may have been more borderline....

-celiac3270

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A positive biopsy will just confirm that the blood tests were correct. Some doctors don't even have you do a biopsy, but most will recommend it. Your doctor should have told you to stay on gluten until the biopsy was done. It can take up to 3-6 months after being gluten free for enough damage to be done in the intestines to show on a biopsy. (according to Dr. Peter Green, one of the top Celiac specialists in the US) Unless you are willing to go back on gluten for a while and postpone the biopsy, it might not even be worth doing. There is always the chance that you had severe damage and have not healed completely, but if you have healed and the biopsy comes back negative, then your doctor is going to say that the blood tests were wrong and you don't have Celiac Disease. Which of course would not be accurate, given that you were gluten free before the biopsy. But most doctors don't seem to realise how much it affects the results.

God bless,

Mariann

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I see. I've only been on the diet for a week, will any damage show up in the next two before my endoscopy?

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Will any returning symptoms be worse? I was vomiting constantly before I became gluten-free.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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