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Kate79

Should I Have An Endoscopy...

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Hi all,

I've been gluten free for about 5 months following positive blood & genetic tests. My symptoms were mainly neurological (migraines and chronic headaches, fatigue, irritability, dizziness - also low on several vitamins/minerals) and have mostly resolved/improved. Within about a week, I felt way better - I hadn't even realized the fatigue was a symptom until it went away!

My question in this: my fiancee is encouraging me to do a gluten challenge and get an endoscopy. I saw a specialist who told me that I was at least gluten intolerant based on the tests and the fact that I felt better on the diet. I've got mixed feelings on doing the challenge and endoscopy. It would be nice to know for sure, but I really don't want the headaches and other symptoms to return. I'm also worried that the endoscopy will be negative, especially since I don't have a lot of digestive symptoms - so I'll go through 2-3 months of gluten illness for no reason.

I should say that my fiancee has been very supportive - he's gone gluten free with me and does most of the cooking, and he understands that we'll stay gluten free even if it's just an intolerance and not celiac, so he's not trying to get out of the diet. I think he just wants to know for sure that it's celiacs - and also he thinks it'll help convince my stubborn mother (and more stubborn sister) to be tested if I have a positive endoscopy.

Any thoughts on this? I'm wondering how and why some of you have chosen to get tested (or not) and whether you thought it was of any benefit.

Thanks a lot and sorry for the long post!

Kate

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Hello Kate,

I was diagnosed this past November not based on an endoscopy biopsy. He went by my symptoms, my history, and my genetic tests.. He said he wasn't going to put me through all that as tests results are 'iffy' at best. I was told that as long as I had the genes (DQ2) and the symptoms and the irritation in my intestinal tract that he say with an endoscope and colonoscopy he was sure it was Celiac. I don't know why they didn't do the small intestine biopsy while they were in there for sure, something about they didn't have a scope long enough or small enough to get in there past the inflammation.. But anyway, I don't think that suffering through the gluten challenge would be worth it if you found success with the gluten free diet. You said you had the genetic tests and they were positive well that's enough for me.

Your choice but I think you would be wise to just say I'm gluten intolerant and may have Celiac and be done with it. Merely my opinion but an opinion of someone who suffered with the digestive issues in one form or another all her life and wasn't diagnosed until age 53. If they told me I had to do the gluten challenge now I'd be saying "NO" as loud as I could.

Have a good evening.

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I wouldn't go through a gluten challenge for an endoscope. I had mine before I went gluten-free, but if I hadn't, I wouldn't go backwards. If your lab test and genetic test were both positive, that should be all the proof a relative would need to be tested. Why would an endoscope matter more than positive genetic "proof" to someone who is genetically linked to you?

In summary, no I absolutely would not.

~Michelle~

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Dear Kate<

I am newly diagnosed as well-just last week. I am 43, and I have been mostly asymptomatic my entire life, though looking back now, now I understand why I may have had bad heartburn and headaches all those years. I chalked it up to a hectic lifestyle and moved on...Until I got really ill after eating a big portion of wheat-meat (seiten) new year's eve and got violently ill. I think I am really lucky- I suspected a wheat allergy (not celiac disease) and asked my doc for a food allergy test. Syhe decided to screen for celiac disease too. I thought, "impossible." When the results came back, we were shocked- off the chart high antibodies on 4 tests.

I have been struggeling with the same question as you. Should I get the endoscopy? I went to a digestive disease specialst and was so happy that the doctor basically said, there is a problem with diagnosing the disease because there are currently two gold standards - and there should only be one. The two are the positive serum tests, and the second is the confirmed damage by endoscopy. He said in my case, my serum levels were so high on all tests- there was no way it wasn't Celiac- and in fact, if I had the endoscopy and it missed sampling a damaged area or didn't show damage, we would both still believe I had celiac disease- so why go through all that?

He was very philisophical/logical about it. He said with patients who may not believe it or need more convincing or motivation to stay on a strict gluten-free diet the rest of their lives, the endoscopy is important. Also, for cases where only some serum levels our high or there are mixed results- or maybe no antibodies yet- an endoscopy is good. Also, if they suspect a lot of damage, they may want to look and see. With me, it looked like it developed rapidly and I have not had a lot of gasterenterological symptoms, so he thought that I would not show much sihns of damage at all. He said however, that he would have no problem at all with giving me the diagnosis of celiac disease right now with no further testing, and to eat gluten-free the rest of my life. I agree and need no more motivation through testing to follow a strict gluten-free diet the rest of my life. Doubt will not creep back in for me (do I really have celiac disease, or can I have this slice of pizza???-Nope-I'm convinced based on my serum levels and family history- my Dad had all the signs of celiac disease and no one ever suspected it- and he died at age 57 from lymphoma, after lups, arthritis, gout, gallbladder, heart attack, etc.- all probably stemming from undiagnosed celiac disease)

Its really a highly personal decision between you, your loved ones and your doctor. In your case, sounds like you already have the results you need- do you need more to know/convince you to eat gluten-free the rest of your life? If you have doubt- the endoscopy may help- but it comes after having to reintroduce gluten and perhaps cause health issues in the meantime......

Good luck to you! I'm also glad to hear your boyfriend is so supportive. I brought my hubby in to the digestive disease consultation and it was great that he could here the conversation first hand, not just my translation if I had gone alone. It will involve the whole family and your loved ones so its best to include them so they know how serious it is- but what an EXCELLENT prognosis you have if you follow a gluten-free diet. Hope this helps and keep on the forum!

Cheers-

Margo

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Man that's a tough one. The decision to deliberately make yourself sick for an extended period.

It's a situation nobody should be in unless they don't have a choice. That's why I think it's a terrible decision to go gluten-free before being fully tested. If one can afford it, an endoscopy/ biopsies is absolutely essential, in my opinion. Then you know for sure that you must follow the gluten-free diet for life.

Genetic tests are nothing. They just indicate you need an endoscopy. I would have tested positive for genetic testing for the 55 years I didn't have Celiac disease. All of my sisters, my brother, my children, at least one of my parents, and probably some of my grandchildren, neices, and nephews would be positive. But none of them have Celiac disease.

If I didn't know for sure I had Celiacs, and continued gluten ingestion might lead to cancer, and I might very well die, I think I would be extremely tempted to say I just have a gluten intolerance. I would be very tempted to eat gluten on occasion, or not worry about being super strict. Heck, I'd gladly trade being a little sick for a day to eat some of the things I miss so badly.

best regards, lm

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