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(New Here) Undiagnosed But Massively Suspicious.

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Hi, new here, 20 year old female. Curiosity and need to advice an opinions brought me here.


Ive had some really terrible digestive problems for as long as I can remember. Ya know, excess gas, bloating that hurts so bad I think I'm having a heart attack, the big D, never being "regular". As well as maybe related, maybe unrelated issues such as sinus problems, crazy sensitive skin that is always dry and itchy, slow healing, easy bruising, and I fell and skinned my knee once when I was 6 months pregnant... my daughter is now 2 months and the skin is still all red and not healed! Hah! And it seems any bruises I get take months to go away. My nails are brittle and break and I have a lot of tiredness and lack of motivation for a 20 year old who's in fairly good shape. 

Well... I strongly suspect celiac.. And so does the nutritionist that I saw just a few months ago BUT... a few years ago I had the blood test for it, twice (I think the two tests were 6 months apart) and they both tested negative. I know getting a negative result is possible but how likely? How many of you got negative blood but ended up having it anyway after getting an endoscopy to really diagnose? 


I went gluten free for a month under the guidelines of a nutritionist but didn't see speedy results and got kind of discouraged, are you supposed to feel better fast or does it take time? I was angry my digestive problems stuck around and only seemed to get SLIGHTLY better but I attributed that to the fact that I was eating very bland anyway. Also, on the third week of the gluten free diet I started taking probiotics, which helped a good bit so I said Hey! This helps! Maybe this was all I needed! So I started eating gluten again annnnnnnd within the next few days I started to feel bad again. But also some weird symptoms came back. Ive always had anxiety problems but pretty much had it under control, a month off gluten and then as soon as I started eating it again I started having minor panic attacks, dizziness and all the digestive upsets but with MORE gas! Now I'm almost totally convinced gluten is my problem but if it was why didnt I see that much of an improvement over the course of a month? Annnnd also I'm the type of person that needs that diagnosis from a Doctor so I know I'm not wasting my  time. I want to go for the endoscopy to really get a diagnosis but my question is do I need a colonoscopy as well or just an endoscopy to be diagnosed? Also.... since I was off gluten for a month how long should I eat it again so that the test can be accurate? I know some "gluten challenges" say 8 weeks but since I was only off for a month does this still apply?


Help me out here! Thanks! 


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Just because you tested negative a few years ago, doesn't mean you don't have it ( or test positive) today. For example, if you had a sore throat and they tested you for strep 3 years ago and it was negative, they would test your sore throat today for strep. Doesn't mean you can never get strep in the future.


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Your symptoms do sound strongly suspicious for celiac or gluten intolerance.  These are two separate conditions, and just so you know, there is no test yet for gluten intolerance - you will always test negative on the celiac tests, and unfortunately NCGI is much more prevalent than celiac.


On your first gluten free trial you were way too impatient; you need to give it a good three months before you even start thinking it's not working.  And the fact that the probiotics helped means that you needed to repopulate your gut with good flora because the bad guys had taken over.  You may need to do this for months or years until everything is restored and healed.


A negative diagnosis can switch to positive at any time if you carry the genetic inheritance for celiac.  It usually requires a trigger for activation, which can sometimes be child birth.   Unfortunately, a month gluten free is too long to discount in the healing process, especially as you say you were starting to feel better.  How long ago since your last blood test?  And for how long have you been back on gluten?  I would think the normal challenge period of 6-8 weeks would apply in your case.  Doctors will sometimes do an upper endoscopy without first doing the blood tests; you do not need a colonoscopy because celiac cannot be diagnosed by that procedure - celiac occurs in the small intestine.  But in any case, the same length of challenge applies because healing starts to take place (as you noticed yourself) :)


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    • Going private no problem with getting the tests now, adds financial pain to the physical pain but better than 6 month waiting list on the national health service. Just feels like a lot of pain and aggravation to tell me what I already know deep down. Feels like my whole future has been taken away with this and I have a feeling I haven't even seen the half of it yet. Doctor seems to be very relaxed on the concept of needing to worry about cross reactivity, gluten paranoia when eating out etc. yet it seems to be the case for most on there that that's exactly how it is for so many people. Someone tell me I'm wrong... or is that really what life becomes in the cold harsh reality of things?
    • It took me years to be diagnosed.  I've been misdiagnosed with several different things and knew that there was more to it.  I requested to have an egd to test for Celiac's two years ago, my doctor never called me back so I went low gluten from then on.  I still felt like hell because I didn't realize that "everything" has gluten in it....  My daughter became ill back in March.  I went to several different doctors trying to figure out what was causing her to be ill.  Our family doctor said she had gallstones, wanted to immediately do surgery on her.  I refused since she didn't fit the typical signs of a child with gallstones.  I requested a pediatric surgeon and then a pediatric gi dr.  The surgeon was smart enough to say maybe ask the gi dr to test for celiac disease....  Then it clicked.  I was so angry and mad at myself and my dr for not listening to my body for the past several years. Her blood test was negative, but the biopsy was positive.  She went on the gluten free diet.  I then said I wanted to be formally tested.  Blood test was negative, biopsy was positive and they ran the genetic screening.  I am a DQ2 homozygous, cat 8.  My doctor apologized to me over and over.   I have two sons that were tested for their genes, one is a cat 4 and one is a cat 2.  If they start showing signs of the disease they will be tested by way of egd.  Their pediatric gi said that I probably would've died by 40 if I was left undiagnosed.   So in saying all of that, fight for your test.  Listen to your body, but don't stop living.  Use this as a teaching tool.  Help others that don't understand the disease.  It'll be tough but you can do it...
    • Hi, thanks... Yes, I was diagnosed with glucose intolerance by an endocrinologist. That's when I started cutting back on sugar. Other than some deficits (chromium, testosterone, D + B-12) they found nothing. Except that I also have mild ostopenia, and I often get kidney stones which is strange but they told me not to worry about it and to get more exercise etc. Which is exactly what I've been doing. I can tell you, banning gluten and sugar from my diet is the best thing I've ever done in terms of diet. The pounds came right off. But don't worry, I'm not a walking skeleton yet, lol. Fortunately the weight loss is a result of my diet, I had problems losing weight before the diet and even when exercising. But it all makes sense now. I easily store carbs as fat and have a hard time losing them. I still have the intolerances though... I had a high white blood cell count but they thought nothing of it. It all points to inflammation in my gut somewhere. But hey they're the doctors if they tell me not to worry about it I'll just have to try and figure it out on my own I guess. Meanwhile I'm really happy to see the belly blubber disappear.  Cheers
    • Also, I know that the DQ2 is the most common one representing celiac disease.   I have low IgA-35 and my DGP Igg - 34.8 (medium to strong positive is greater than 30) All the IgA labs were within range. I have Hashimoto's as well. My vitamin D level is 23. I guess I'm wondering how likely it is that I have celiac disease.  The genes I have are not the worst ones to have, I believe, and while my DGP Igg is high it's not crazy high.  I'm still awaiting a call back from the GI as the PA told me to go gluten free for two weeks and then reintroduce it (this was last week while the GI was out of the office).  I guess I'm wondering what the point of that really is... Thanks again everyone for your help and advice as I navigate this...
    • Do you have any diagnosis from a doctor?  Weight loss like you are describing could signal a serious issue that you shouldn't be messing around with.
      You shouldn't be cutting out all of those foods without going to a doctor to figure out what is going on.
      A doctor would be doing testing to make sure nothing serious is going on.
      I'm the first person to say I haven't found a good doctor and I'm suffering with serious pain and issues because of that so I am altering my diet, but I'm following up with the doctor.  So if you haven't schedule an appointment with a GI doctor or some doctor.
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