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Newbie Questons About Testing


BUGTWIG

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BUGTWIG Rookie

Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn


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tarnalberry Community Regular

As you noted, you don't need an official diagnosis to eat the way you want, so there's unlikely to be a really good reason for a diagnosis. There's a question about whether or not, if you were hospitalized, but able to eat "real" food (non-IV nutrition, for instance) that you'd be able to 'demand' gluten free food, but that's about it. You can talk to your doctor about having it recorded that it's suspected you're celiac based on dietary results, but there are downsides to a formal diagnosis as well - in some cases (some people in the US, for instance, have been denied insurance).

MrsLady Newbie

I am new to using a computer to "chat" about stuff. So forgive me if I don't seem to know what I'm doing.

I need some help. I had an endoscopy that showed the "villi were blunted over" so bloodwork was done. The bloodwork was negative to celiac antibodies. I know this sounds strange to wish it was positive, but I'd really like to know what is wrong with me. I've been having medical tests for about 6 years (I'm 50 now). About 2 years ago I was finally diagnosed with a Vitamin D deficiency (osteomalacia) - the symptoms were the same as fibromyalgia - a prior diagnosis. As soon as I started getting sunshine without sunscreen I started feeling better. However, even though I can manage the pain with sunshine, I still have pain in my upper right side and often get stomach upset after I eat. There was never any explanation as to why I had the Vit. D deficiency, and Celiac would certainly explain the problem. My 23 year old daughter actually has more symptoms of Celiac than I do. We have the same doctor. Any suggestions on where to go next or what to do next?

Thanks so much for your advice to come!

mellajane Explorer

I had been sick since seven with vomitting hot cold sweats for days I am now 30. Someone a Dr. I was working for had seen me sick and suggested i stop eating wheat .I noticed a difference immedietly. At the time no one Dr. suggested that the test would come back negative when not eating wheat. I have never felt better and Dr.s still want to argue that I do not have celiac. This is the only thing in 20 years at least that has helped. Im gonna tell you it is a hard transition. If you are still getting sick there is something you are still using that has wheat or gluten in it. Remember read everything you touch or consume down to your cosmetics, shampoos ,lotions, its crazy....If you are feeling better stick to it. I have been gluten and wheat free for 3 years now. It does get better. Good luck

Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn

Guhlia Rising Star
Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn

So long as you're out of the school system, I'm assuming you are, a diagnosis probably isn't necessary. Actually, not having a diagnosis, as Tiffany stated, may save you some headaches in the long run. Celiac can make it very hard to get life/health insurances in the US. You may want to work with your doctor at getting gluten intolerant added to your charts so that if you ever have a hospital stay they will feed you properly, but other than that you likely won't need a diagnosis.

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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