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Confused About An Almost-Diagnosis

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Hello, I'm new to the forum and not sure if similar things have been posted...but I'm a bit confused about what to think of my 'almost' diagnosis.

Last spring/summer I was tested (blood test) for celiac disease. While I was waiting for the results, I looked up some information about celiac and thought "wow, that so sounds like me!" I cut out gluten for 3 days, and started to feel better - but my blood test came back negative. I told my doctor about cutting out gluten, and asked for a referral to a dietitian. I did an elimination diet and sure enough dairy (which I already knew) and wheat made me sick.

I got about 75% better on a gluten free diet - and I finally just had an endoscopy/colonoscopy to confirm it and check for any other issues. I didn't eat gluten prior to the endoscopy, which I knew I should have - but I only had a few weeks prior and who wants to purposely feel sick anyways?! The doctor's report stated:

"minimal inflammation in the duodendum. Celiac disease could account for the changes, but the changes are very mild. It is difficult to say whether you have celiac disease or not, but with negative laboratory tests, this makes it fairly unlikely"

I had been gluten-free for 9 months at the time of my endoscopy. I thought that any inflammation in the small intestine would be enough for a diagnosis - especially being that I'm not even currently eating gluten?? And don't a lot of people have negative blood tests, but are positive for celiac?

I know it seems silly to want an 'actual' diagnosis. It's just that I have family and friends who are so doubtful and think I'm just being picky, making it up or being high-maintenance. I continually get comments like "just a little bit won't hurt" or "you're not that sensitive, are you?" I feel like a real diagnosis would give me something to stand on. Has anyone else had this issue? And when I fill out medical information do I write celiac disease or gluten intolerance?

So sorry this is so long! Thanks so much for any advice - I'm so glad to finally have a place to come to ask questions!

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The false negative rate for the blood tests is about 20-30%. So yes you could have had it and had a false negative blood test. Not to mention there are several differnet test, so if you only had one and not the full celiac blood panel then you are not getting a full picture. Many here have been in your same situation and self-diagnosed with dietary response. Your endoscopy came out the way it did becaus eyou have not been eating gluten. Actually it's surprisign that they found any damamge at all after 9 months gluten free. Perhaps getting small amounts acidentally or from well-meaning family kept some damage active. You are going to need to decide what is more important to you--

A piece of paper that says you have celiac or being healthy.

Some people do successfully get through the gluten challenge--which ideally should be 3 months of eating the equivalent of 3-4 slices of bread daily--to get diagnosed. However I think many more people here tried and failed at eating enough gluten for testing. The most importan thting is that YOU are completely convinced that you cannot eat gluten.

Now as to your family members that are not convinced, there is NO reason for you to divulge the details of your test results. At some point you apparently had a dietician tell you to stay gluten free, correct? So all you need to do is tell the nay-sayers your DOCTOR strongly reccomended you remain strictly gluten free. You need not specify which dr or why. Just be firm and then tell them you prefer not to discuss the details of your health any more than that if they probe for info. If they insist and even go so far as to put gluten in your food but tell you it's gluten free (as some here have had happen) Then be sure that they know/see/hear every gross detail of how sick you are from that "little bit that shouldn't hurt you."

lastly, Welcome to the board! Stick around and feel free to ask questions or vent your frustrations. :)

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I'm in the exact same boat as you are except this is my 2 1/2 year old son! He has the intestinal damage and inflamation and physical symptoms with nasty GI outcomes that obviously points to gluten consumption but they won't give us the diagnosis! Gaah!

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You really have my sympathy! I go through the same with my 5 years old daughter.

I think the right answer is just a little will hurt a little more yes. Do you really want me/her to hurt?

I find people unsitive personnally, so fair enough if they want to label us as "that much sensitive" ;-)

The situation is not that funny though.

I think it is important enough to find out that you got inflammation from having gluten in your diet and this should be taken seriously into account.

I totally appreciate the personal need to really find out what it is, either sensitivity or celiac or intolerance because there might be other issues linked.

In the immediate though, it is important to remind ourselves that it is not always easy to know for sure, that the symptoms and damages can be the same.

Courage and perseverance.

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Thanks for the replies. GlutenFreeManna - I think that you're correct in saying that I am probably getting 'glutened' a lot - and that is probably why I am only feeling 75% better. I have IBS too, which could account for some discomfort - but unfortunately I know I am fighting an uphill battle. My husband thinks he is fairly understanding - and then leaves breadcrumbs everywhere, or I'll catch him absentmindedly reaching for my separate cookware for gluten food. I know he feels he's trying but really we have a long way to go before he 'gets it'.

brendab & Neali - so sorry that you are going through that for your little ones. Watching your children suffer is awful. At this point I'm glad it is me and not my two little boys that are having to deal with this! That being said - I have my suspicions about both of them....Just one more reason I was hoping for a firm diagnosis so that I could have more to back me up when I ask their pediatrician for testing. They both used to complain of frequant stomach aches, and that has noticeably reduced since at least some of their food is gluten free now. My youngest has been monitored by past docs for his slow growth, and my oldest has had fatigue and a bunch of other issues that I now realize could be attributed to gluten. I won't take them off gluten completely yet though in hopes of accurate diagnosis for them! (and honestly my husband probably wouldn't go along with it unless the doctor told us to anyways).

I'm just thankful that we live in a time when gluten is being researched more and there is more available for us. And at least I have some control over keeping myself healthy - even if it is frustrating at times!

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Thanks for the replies. GlutenFreeManna - I think that you're correct in saying that I am probably getting 'glutened' a lot - and that is probably why I am only feeling 75% better. I have IBS too, which could account for some discomfort - but unfortunately I know I am fighting an uphill battle. My husband thinks he is fairly understanding - and then leaves breadcrumbs everywhere, or I'll catch him absentmindedly reaching for my separate cookware for gluten food. I know he feels he's trying but really we have a long way to go before he 'gets it'.

brendab & Neali - so sorry that you are going through that for your little ones. Watching your children suffer is awful. At this point I'm glad it is me and not my two little boys that are having to deal with this! That being said - I have my suspicions about both of them....Just one more reason I was hoping for a firm diagnosis so that I could have more to back me up when I ask their pediatrician for testing. They both used to complain of frequant stomach aches, and that has noticeably reduced since at least some of their food is gluten free now. My youngest has been monitored by past docs for his slow growth, and my oldest has had fatigue and a bunch of other issues that I now realize could be attributed to gluten. I won't take them off gluten completely yet though in hopes of accurate diagnosis for them! (and honestly my husband probably wouldn't go along with it unless the doctor told us to anyways).

I'm just thankful that we live in a time when gluten is being researched more and there is more available for us. And at least I have some control over keeping myself healthy - even if it is frustrating at times!

I just wanted to clarify for you that "IBS" is NOT a disease. It is a set of symptoms and describes what is happening--you're bowels are irritable. It's a diagnosis given when the docotrs don't know what is causing your symptoms. Most likely your IBS is CAUSED by your celiac disease. There is a good chance your IBS will resolve completely after a long period of being 100% gltuen free. But that DOES mena you need your husband on board. It may mean you take your entire house gluten free in order for you to be safe. I wish you luck in convincing your family to help you get healthy again!

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Ok. So here's a ? What would they tell me to do differently for my 9 year old son if he does test positive for celiac? Is there more they can do besides tell us to avoid gluten? I'm already doing that. I can't figure out why I would torture him by giving him gluten so I can have a piece of paper that tells me what I already know. Does anyone know what we gain by having him tested and formally diagnosed?

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Does anyone know what we gain by having him tested and formally diagnosed?

It is easier to get cooperation from the schools to keep him gluten free if you have the piece of paper from a doctor.

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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