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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

This Is Getting Old, How Long Did It Take For Your Diagnosis
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15 posts in this topic

Finally got my EGD results from about two weeks ago, this was to reassess for celiac disease and iron deficiency. They said the biopsies came back ok but showed small bowel inflammation which because of iron problem is quite suscipous for Celia disease and I need the blood work again. I have had this test done about four times, it keeps coming back normal but the GI doctor keeps suspecting it. I also had a video capsule done with the EGD and the capsule sat in my stomach for 8 hours!!! It never made it to my small intestine which means the test was useless and I wasted four hundred dollars and now i must be checked for gastroparesis. Did anyone else have tests done over an over again before they finally got the answer! So frustrated

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I am sorry I cannot be of more help, I feel like I am in your boat. I have had a biopsy that came out negative but then I recently had a positive result on a celiac panel, so it is very confusing. I see that you have other allergies, and I am not an expert but with other allergies, you very well could have celiacs or a wheat allergy, its finding it at the right moment is the problem. I hope you find answers too, as I know it is very frustrating!

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Donna......I am reading your signature lines and am horrified that you have so many problems that all are strongly connected to Celiac and yet, you still struggle with a diagnosis?

Lymphoma is one of the cancers Celiacs are really prone to when they go undiagnosed. That changes with a strict gluten-free diet.

IBS? Not a diagnosis but a clear indicator that something is irritating your bowel.

Positive lupus test? Severe anemia? What the hell is your doctor waiting for? :o

Forget the diagnosis and move on to the gluten-free diet and don't look back. You are too young to be this sick. You are young and it may take a number of years for damage to get bad enough for a doctor to find it in your small intestine. I was 46 years old, after years of suffering and total ignorance by the AMA. Do not let them do this to you!

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As long as your insurance holds out, they'll find ways to harvest it......

At some point, some of us just give up on this growing rows of dollar bills for the tropical vacations, and get on with doing a real, careful gluten free diet, and see what happens. Worst possible scenario is that you learn to cook and bake creatively with new ingredients. I did have a pretty funny thing happen about 5 years ago where the clerk at the doc's office called me up and told me "great news- you don't have celiac!" in response to some routine blood work - turns out they had run a celiac panel on me when I asked for a thyroid test :rolleyes: uh thank you, I know, I would certainly hope that would look like that, after 5 years off the stuff. But really, what did the thyroid tests show, again ? "normal" "great, got any numbers ?" "uh, will have to check for that." "mmm, okay." :mellow:

If the capsule sat there like that, you should probably humor them with the gastroparesis test. You can have both gluten intolerance or celiac and other conditions.

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My doctor didn't want to order a gastric emptying study but I insisted I am about ready to say screw it all and test out the diet again and see if my iron levels improve.

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My doctor didn't want to order a gastric emptying study but I insisted I am about ready to say screw it all and test out the diet again and see if my iron levels improve.

I think this is a wise idea. I know you are discouraged but with your history of illness, all strongly associated with Celiac, you need to do a strict dietary trial. But be prepared that it can take a long time for iron levels to normalize. Hang in there and I hope you feel better really soon!

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I agree with the others that it's time to start the gluten-free diet. It is entirely possible that you are a non-celiac gluten intolerant person, but with your history, I'd guess celiac. Besides, a gluten-free trial is starting to be recommended for sufferers of other autoimmune disease (like lupus) because it often helps.

Remember those first few weeks gluten-free are the hardest, and many results are slow to come, so stick with the diet for a good 6 months. I have been gluten-free for 6 months and am still noticing changes in my health now. Good luck with it.

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As others have said, some of us give up on the diagnosis and just get on with gluten-free living. My doc wouldn't order an endoscopy, thought it a waste of time due to my willingness to live gluten-free. I had only one positive blood test, TtG IgG, which could have indicated celiac OR other autoimmune activity (thyroid, for example). Doc said "I can't say it's celiac, but I won't say it's not".

My life has improved so much on gluten-free GRAIN-free eating that I will NEVER EVER look back, diagnosis or not! Good luck to you!

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II was not diagnosed until I was 53--so, about 30 years after I started exhibiting real signs--but only because I had to TELL my PCP doctor what I had (despite my falsely negative blood work and a botched endoscopy) and he agreed and .I finally found a celiac-savvy GI doc, but I was just about ready to keel over and die by then. My story is long (and boring to those who have heard a 100 times) :lol: suffice to say, it took WAY TOO long.

I had spent decades going downhill and having enough obvious symptoms, there should have been a giant red arrow pointing down over my head blinking "celiac" celiac" celiac".

I had more tests, blood draws and scopes, drank enough barium and had MRIs and EMGs and EKGs and I was really tired of having things shoved in, up and through.... and if this guy had not declared me a celiac, I was about ready to say

screw it, I'll just do this gluten free thing on my own.

I share your frustration and at this point, I have to agree with all the members who say "enough" but if your insurance will cover it,

have the test done as it is not "usual" for the capsule to just sit there.. Your sig line says "malabsorption" and anemia, etc.--well, if it is not celiac,causing it--something is and at least your doc is trying to get to the root of the problem. I'll at least give him some credit for that. (and I am no fan of the AMA)

You should be ready very soon to say "uncle" and go gluten-free and never look back.

Hang tough and I do hope you feel better --very soon.

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Like Irish I was in my 50's when I received My "official " diagnoses . I had symptoms since childhood including DH. Over 40 years of misdiagnosis ,doctors implying I was a hypochondriac or just plain crazy .

I had been gluten free for almost 2 years when I received my "official " diagnoses thru a DH biopsy and my reaction to a gluten free diet.

.An "official " diagnoses has not made it any easier for my children and grandchildren to receive a proper diagnoses. That official diagnoses has not made the members of the health community or my family ( brothers and sisters) revisit their assumption that I am nuts.That official diagnoses has not made it any easier for my gut to heal .

A strict gluten free diet . Healing my gut. Eliminating my other intolerances . My children and grandchildren seeing me heal and become healthy .These are the important things NOT that " official " diagnoses .

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well said, Chill ... well said!!

Either way,DX or not, the important thing is healing and feeling better than we have in years.

(and yes, my "official DX" has not really made my family members do anything about their own situation either..... :unsure: .)

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well said, Chill ... well said!!

Either way,DX or not, the important thing is healing and feeling better than we have in years.

(and yes, my "official DX" has not really made my family members do anything about their own situation either..... :unsure:.)

My niece was recently "officially " diagnosed and her mother STILL will not even consider being tested , :blink:
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My niece was recently "officially " diagnosed and her mother STILL will not even consider being tested , :blink:

I have come to the conclusion that our relatives have to be pushed to wall as we were. Dying... or so bad they cannot stand it anymore.

sigh

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Thanks for all your opinions. I have done the diet before when I was having a lot of stomach pain and diarrhea. I went off and had no problems except for extreme constipation, but that appears to be when my iron deficiency hit. I work as a nurse and one of the doctors that took care if me when I was hospitalized twice for dizziness, blurred vision, palpitations the list goes on and she discovere the iron problem with my second admission. She thinks I should follow the diet regardless of what they find, maybe it's time I accept it, take her advice and move on with my life

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Well, you have a full cheerleading squad here if you need the support. ;)

Honestly, there's no harm in following a gluten free diet as long as you get enough fiber from other protein sources and if you feel better, that's all that matters, IMHO.

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    • Newbie: mother to coeliac kids
      Wonderful news to hear that he has finally had his testing done, and can go gluten free. I understand that he is afraid of needles. Most children are. It is great that the hospital have acknowledged his and your family's suffering. Hopefully now they will give him the A1 treatment that he deserves. I am really looking forward to hearing of his improvement, as no doubt he will come along in leaps and bounds. Children are remarkably resilient, and with any luck he will enjoy a healthy and bright future with adherence to his required diet. Way to go Mum, you have been through a lot, watching your boy suffer. I hope that you are handsomely rewarded with being able to watch him flourish now. Good luck with your older boy too. Keep us posted.
    • Newbie: mother to coeliac kids
      Well thank goodness the gluten eating is over for him now & he can begin the journey back to good health! Poor fella. He was so sick! Just a heads up --- he isn't going to feel better instantly but at least he's a kid & they heal faster as a general rule. Bone broth!!!! Yaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyy mom! That's really going to help him!   Do I recall correctly that you still have the 17 yr. old to go through testing yet?
    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
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