14 replies to this topic

[DonnaMM]

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

[Jen_1984]

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!

[Gemini]

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?

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!

[Takala]

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 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."

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.

[DonnaMM]

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.

[Gemini]

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!

[nvsmom]

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.

[beachbirdie]

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!

[IrishHeart]

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) 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.

[a1956chill]

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 .

[IrishHeart]

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..... .)

[a1956chill]

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..... .)

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

[IrishHeart]

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

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

[DonnaMM]

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

[IrishHeart]

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.