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Do I Really Have Cd?


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14 replies to this topic

#1 Karina

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Posted 26 October 2004 - 12:48 PM

Hey everyone!
I was diagnosed with celiac disease in May, and I have been gluten-free since (with some stumbles along the way of course). In order to understand why I am confused, I have to tell you how it happened that I got diagnosed.
I started having a lot of abdominal pain, some chest pain, diarrhea (more than usual), and lots of headaches and respiratory infections...AFTER getting on the combo birth control pill. I suspected the pill b/c the abd. pain and chest pain seemed to start around the time I got on it. Now prior to having my babies, I had had no problems with the pill at all. I switched several times and ended up on the patch.
During this time I was sent to a GI guy who right away suspected celiac disease. I have always been a tiny person and have had diarrhea on and off my whole life, but the bloating and pain had gotten so much worse with the hormones. I told him my pill theory and he agreed that it could aggravate an already existing condition, such as Crohns or Celiac. He ordered a panel on which my antigliadin IGg was high and one other one was borderline but within normal limits. He said this was suggestive of celiac disease but we needed to do an endoscopy.
The endoscopy came back saying something like infiltration of lymphocytes that could be celiac disease. The doc said even though I didn't have strong blood tests, he believes I have celiac disease, and that even though the villi are not terribly damaged right now, that doesn't mean they won't be if I continue consuming gluten. He said I could have celiac disease and maybe my villi would never flatten, but no one knows and that I should start a gluten-free diet.
So, I felt better on the diet, with some ups and downs. There were several eating out experineces that left me quite ill, even though everything was supposed to be "gluten-free". I just assumed I had gotten contaminated with gluten.
Now I have finally gotten off of the birth control and my tummy is flat again! I do not have the pain nearly as much--in fact hardly ever. I am still strictly gluten-free as well.
Oh, and one more thing, is that I had a bone scan and I have osteopenia. I am 30 yrs. old.
The reason I am questioning the celiac disease diagnosis, is b/c I am having the kids tested now. They had the exact same lab results that I did, and their GI says based on those lab results and the fact that they eat well and are growing fine, they don't have celiac disease. He says almost ALL celiacs have positive TTG results and that frankly if he had been MY doc, he wouldn't have done the endoscopy. He gave kudos to my GI and said that I am a VERY rare celiac. Because of this he wants to be careful with the kids. He has them on a gluten-free diet until mid- November when he then wants us to challenge them with gluten and see what happens. He wanted to try this first, before something more invasive.
I am sorry this is so long, but I really don't want my kids to have celiac disease. I want them to be able to eat whatever they want like B-Day cake at parties and goldfish at church....when the doc said that about me being a rare celiac, it made me question my whole diagnosis, and the only reason I was checking the kids was b/c of MY diagnosis. Now obviously my own doc feels strongly that I have celiac disease as he sent a letter to my kids ped. explaining why they need to be tested. Am I foolish to question this? Do others have celiac disease without positive blood results or with only partial positives--like high IgG?
Karina
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KARINA

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#2 darlindeb25

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Posted 26 October 2004 - 02:55 PM

;)the more i read, the more i find similarities to my own life--things i never connected to celiacs until i read them happening or have happened in someone elses life--i was just reading this last post and it hit me---when i got pregnant with my last baby, i was on birth control and i had been so sick while on it--my family doctor told me i was having a run of the flu--i had a few good days and so many bad ones--i ended up pregnant and he just looked at me and smiled, then said, "birth control pills are 99% safe and you just had to be the 1%"--i was so sick that whole pregnancy, i lost 40#, never gained a thing and she was my littlest baby--it was after her birth that my panic attacks started and it was another 19 yrs before i went gluten free--i was 46 before i found any relief--i think its great that you know now and that you can protect your children from what we had to go through--my kids all know the odds and they are adults now and i have told them its up to them if they feel they need to be checked out--i do worry sometimes about one of my grandchildren----deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#3 tarnalberry

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Posted 26 October 2004 - 04:39 PM

It sounds like you are gluten intolerant and are just not YET celiac. Celiac technically happens when they can identify significant damage to the intestines. I say why wait for that to happen if you know your body doesn't like gluten already?
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 Guest_missyflanders_*

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Posted 26 October 2004 - 05:08 PM

I to have been wondering if my diagonosis is correct. I saw a celiac specialist in Chicago that questioned my biopsy report from my original GI. My antibodies for celiac are negative, despite some "cheating". I had no real improvement in my gas and bloating despite being on the gluten-free diet (I only cheated occassionally). I also have no worse symptoms when I eat gluten containing foods.

That being said, my mom does have celiac, and I know it can be hereditary. I have also been diagonosed with hormonal problems, which have landed me on the pill despite having a tubal. I have never had any vitamin deficiencies and I do not have osteopena.

Can celiac come and go? Can other things cause similar things to happen to your villi (they were blunted according to the report).
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#5 Karina

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Posted 26 October 2004 - 05:23 PM

Missy,
I have been trying to get my mom to get an endoscopy. Only one of her antibodies on the celiac panel was out of whack and it was a different one than on mine, but she has very textbook symptoms. I think if I knew she were celiac it may help me to accept my own diagnosis. It's just that to me, it is a really big deal to have this or to think you have this if you really don't, you know? My villi were not even blunted, I think the doc said I have the first stage of damage which is white cell infiltration or something like that.
I know I need to gluten challenge myself, but I am scared too a little bit. The times I "thought" I got gluten accidentally before were not fun. Still, I think it will tell me something. I want to wait a little longer to have more time off the pill before doing that. One reason I stayed on the pill as long as I did was to give the gluten-free diet a chance to work and so I would know if the diet itself did any good. I did feel better after going gluten-free, a lot better really. However, since being off the pill, I feel MUCH better. I am sane now :lol: , and I am not bloated. Unfortunately, I lost weight and it is still going down. I needed that weight, not the bloating. I guess a lot of that was probably fluid retention, so oh well. My blood pressure is really low now, it was in the 120's while on the pill, and now it is sometimes in the 80's--no wonder I feel so mellow now! B)
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KARINA

#6 tarnalberry

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Posted 26 October 2004 - 06:53 PM

missy, what do you call occasional cheating? symptoms can last for a week, so if you "only" cheated once a week, you may never have let your body be gluten-free. you can't really judge how the diet does for you unless you are STRICTLY gluten-free for a number of weeks/months.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#7 Guest_barbara3675_*

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Posted 26 October 2004 - 07:18 PM

PEOPLE, PEOPLE, PEOPLE...............This is nothing to fool around with. If you are gluten intolerant, then you will develop celiac disease which can lead to death. Plain and simple. You can have yourself and your children tested by Enterolab of Texas once and for all and you will know just what the deal is. The testing is non-invasive, done in your own home, you will get the results back in a matter of weeks, and they are very professional and complete. My granddaughter has had celiac disease for five of her six years of life, doing so very well. I never suspected I had a gluten intolerance until my dear daughter-in-law suggested that I get tested, and sure enough, I am the one with the gene and with a gluten intolerance and through Enterolab, also found out that I am casein intolerant too!!! I am feeling so much better since going gluten-free/cf. You must NOT eat food with gluten if you are gluten intolerant. You owe it to the people who love you to be strong on this issue and it can be done. There are lots of foods out there without gluten, think of it as a new adventure in life. Check out the thread that is going now about the published list of all the foods at the grocery store that are gluten-free. Best wishes to you.....

Barbara
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#8 jaimek

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Posted 27 October 2004 - 05:02 AM

I was also trying to figure out what caused my Celiac to come on out of the blue and I traced it back to the birth control pill. I never had any of the symptoms in college but after I graduated I went on the pill. From that point on it was all down hill and now, 4 years later, I have full blown celiac disease. I too have Osteopenia and am only 27 years old. Wish I would have known about this beforehand. I would have never gone on the pill. This post has definitely got me thinking that the pill could be a definite trigger of this disease. Ugh! :angry:
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#9 lovegrov

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Posted 27 October 2004 - 05:57 AM

Karina,

Your original doctor is the smart one. Yes, people with celiac can come back with only an elevated Igg. I know of people who had only elevated Igg and the biopsy showed flattened villi.

Your children's dcotor is laboring under the old definition of celiac. In other words, it's not celiac until the villi are completely flattened and you're sick as a dog. At your stage some doctors will tell you you can keep eating gluten because you don't have celiac. This is no different than the doctor telling you to just come back when you get sicker, because you will get sicker. Gluten intolerance is merely an early stage of celiac for most people. The final proof in your case is that you feel better gluten-free.

Somebody else suggested getting Dr. Fine's tests but I don't see the use, at least not for you. Fine's tests just show gluten intolerance; they can't show celiac. You already know you have gluten intolerance so what's the use?

richard
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#10 Karina

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Posted 27 October 2004 - 12:14 PM

Thankyou everyone for your responses.

Richard,
Thankyou for clarifying the Igg thing for me. I thought that was the case but then when this ped. GI said differently I was confused. In fact, he says that they are talking about throwing the Igg out of the celiac panel alltogether! Still, I am left not knowing what I should do about the kids. The ped. GI did mention genetic testing but said it wasn't a sure thing which confirmed what a geneticist had told our regular ped. as well. Apparently there are many genetic factors with celiac disease and so it can not be nailed down to just one or two tests for sure. Then the endoscopy requires general anethesia and intubation for a child, and of course even if they don't have it now, doesn't mean they won't get it later. So what do I do? I think the doc was right to suggest this home test with the diet-then-challenge thing. We will challenge the kids mid-Nov. and then see the doc again to report what happens. So if nothing happens (they don't get sick with gluten), do I just put them back on a regular diet and watch for signs and symptoms or have them periodically tested with a panel?

Also, thankyou for clarifying (along with Barbara) that for all practical purposes, there is no difference between gluten intolerance and celiac disease. Even if I don't have celiac disease and only an intolerance, I can surely see that I need to stay gluten-free, especially due to the osteopenia--my mom has full blown osteoporosis, and I don't want that! Not to mention all of the other problems that gluten apparently causes in my body.
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KARINA

#11 lovegrov

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Posted 27 October 2004 - 12:26 PM

You can go ahead an do the challenege and if they have no reactions I'd probavbly just watch them. Igg is the least specific of the tests. My son had lsightly elevated Igg but because he has no symptoms whatsoever we decided just to watch him. I would need more to put him on the diet.

richard
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#12 Karina

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Posted 28 October 2004 - 10:18 AM

Thanks Richard. I really appreciate your response as one parent to another. It is good to know there are others who have similar situations. And I am with you, I don't want my kids to have to be gluten-free unless it is for sure necessary--I will at least need more than what we currently have to go on to keep them gluten-free. So we shall see what happens in November when they get "challenged".
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KARINA

#13 Ruth

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Posted 28 October 2004 - 11:17 AM

Karina,
Hi. I just read your first post in this thread and had to let you know,
all of my blood tests were negative! My biopsy showed definite celiac. While blood tests ususally are a good way to test for celiac, they are not a guarantee.
Like you, my most severe symptoms started after my second child was born... I'm not sure if the pill had anything to do with it though.
Keep an eye on those kiddos!
Take Care,
Ruth
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Ruth
Diagnosed 3/03 (Positive Biopsy/Negative Blood Tests)
Daughter dx 12/03 (Positive biopsy/Positive blood tests);
Two sons (Negative blood tests); One on gluten-free diet (6/04) ... cured his persistent, severe headaches.

#14 GEF

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Posted 28 October 2004 - 11:51 AM

If you are gluten intolerant, then you will develop celiac disease which can lead to death.

Just wanted to clarify and say that although this can occur it is always the case. Genetics play quite the role in celiac and you can be gluten intolerant and never develop it. I too wondered this up until recently.... I feared the risks of not going gluten free (I was positive on igg & iga), but my doctor performed HLA (gene typing) testing and gave a clear answer on whether I would ever develop it in my lifetime.

Just a side note: If your tests are inconclusive, please make sure that your doctor rules out other digestive disorders.. antibodies can be elevated for other digestive reasons, such as crohn's... you'll certainly want to get those ruled out before you determine it's an intolerance issue exclusively. :D

Gretchen
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#15 3boyzmom

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Posted 28 October 2004 - 06:44 PM

More and more research is being done and we are finding out that a gluten intolerance is the basis for SEVERAL auto-immune diseases, of which celiac disease is only one. It is true that if you are gluten intolerant and continue to consume gluten you may or may not get celiac disease, but you will definitely get something. Just look in your family history to see what awaits you... is it thyroid imbalance, diabetes, arthritis, MS, fibromyalgia, Lupus, celiac disease, Crohn's, Colon cancer...???


An elevated IgG is nothing to ignore.... it means you are gluten intolerant and that your body has developed antibodies to gliadin. The IgA and the tTG are more specific to celiac disease because these are the antibodies that are set to defend the areas of the body with mucosal linings and would therefore indicate if there was an attack on the small intestine. The IgG are defenders that float in and around everywhere. which is why I believe that they are the ones responsible for the damage elsewhere.

If they threw out the IgG then my son would still be sick and failing to thrive and on death's door... I had never heard of celiac disease until he tested positive for IgG and IgG only. I can't imagine what he would be like today if we hadn't caught it when we did :o
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