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How To Convince My Doctor?


keeper2

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keeper2 Newbie

Hi all,

I have a lot of symptoms similar to celiac disease, and I am also food allergic, I told my doctor about the pain I feel after eating bread or pasta and my gastro problems, he told me about gluten stuff. so he ordered cbc and stool fat test as a beginning,but the results were normal . and now he believes I am not celiac and no need for further tests like biobsi.

but from other tests I have b12 and iron Deficiency

, but normal minerals. doctor sayed if I had celiac disease then blood must be affected somehow.

I just want to know is that true? is every celiac must have a fatty stool and weak blood?

how come Iam not celiac while I have the following symptoms:

strange stomache pain after eating huge amounts of gluten

lactose intolerance

foggy brain

constipation

food allergies

fatigue

can the previous symptoms be a result of my food allergies? cuz I am newely diagonosed with allergy so didn't begin yet avoiding all allergens.

please, I need your help.


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RiceGuy Collaborator

Firstly, from the posts I've erad on this issue, many have had negative test results. It also seems that this happens most of the time if you aren't eating gluten at the time the tests are done. And that you'd have to be eating it for a considerable amount of time before being tested.

Many report going gluten-free, and having great improvement whether they get a doctor to confirm gluten intolerance or not. Now Celiac disease as I understand it, is the damage cause by the immune response. It's the intolerance which is characterized by that response. Therefore, you can be gluten intolerant and not have celiac disease. In many cases, it goes unrecognized, and the damage is allowed to progress until the person developes so many problems it becomes impossible to ignore. That's what happened to me. I never got tested for celiac disease or gluten intolerance. All the doctors I went to found nothing. I stumbled into it by chance. Now I am gluten-free and recovering at last. However, after so many years of eating the wrong foods, I'm looking at a long recovery process.

Going on the diet requires no doctor's approval, and no prescriptions, etc. It's something you can try, and if it works for you, does it matter what the tests say? You've already mentioned having relief from avoiding some gluten. I'd recommend going totally gluten-free and see how it goes. The tests can give you a doctor's confirmation if that's what you want, though again you'd basically have to be glutenizing yourself to get some of the results to show positive. Plus unless there is already damage to the small intestine, that test will be negative anyway, which would be great news for you.

The most important thing is to get the condition under control asap.

There is a lab that some have talked about, which claims to have more accurate tests. It has been mentioned on recent threads, and a search could turn it up too.

nettiebeads Apprentice

I agree with RiceGuy. The lab is Enterolab by Dr. Fine. My dr. dx'd my celiac disease with diet alone. Had real bad D for six weeks - pale frothy and REALLY bad smelling. He put me on the gluten-free diet, went back 2 weeks later; the D was gone, he pronounced me having celiac disease, stay on gluten-free diet. No tests. Your body is telling you that it doesn't like gluten. You can go for the tests to find out if it is celiac disease, or gluten intolerance or allergy. No matter what it is, it's all treated the same - gluten-free diet. But for complete relief, you have to be totally gluten-free! Look out for all of the hidden places gluten can hide - hair spray, OTC meds, vitamins, lotions... And cross-contamination in you kitchen, need your own dedicated toaster....

But it's not all that bad and after awhile it becomes second nature and you don't really think about it.

Come here for any questions - I've learned more here in 3 months than I have in all of the years since being dx'd with celiac disease.

Annette

jerseyangel Proficient

Keeper--The symptoms you describe certanly point toward possible Celiac. A CBC and stool fat testing won't tell you if you have it. If you are interested in being tested, ask the Dr. to do the Complete Celiac (blood) Panel. The other test that is used to DX Celiac is a small intestine biopsy done with an endoscope. You could also try going completely gluten free yourself for 3 weeks and see how you feel. It is true that you can do this yourself--you don't need permission to eat the way you choose--but if you do want to be tested, it is important that you continue to eat gluten (don't cut down, either) until then. Doing that will avoid a false negative. Also, if you have a B12 and iron deficiency, your blood is affected--at least in the sense that you are anemic. Anemia was one of my symptoms and is very common with celiac disease. Do you supplement with iron and B12? Doing that could begin to help with the fatigue. I found that B6 was a big help to me, also. Hope this helps.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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