21 replies to this topic

[lcn1010]

I am new to this site and decided to join because you all are so helpful to each other. Let me tell my story, since 2007 I have been dealing with intestinal issues and allergies. I have Kaiser and I would go in complaining about swelling after I eat, heaches, join pain, nausea, vomitting, chronic fatigue, depression, being cold all the time, unable to concentrate and hives. I was told several times that I have constipation and to take fiber and should be ok. For my depression I was given Prozac and have been taking ever since. I was told to go to bed earlier should help with the fatigue, but no matter how much I sleep I am still tired all day every day. They have always made me feel like I was going crazy or like I was a hypochondriac. I would do everything they tell me but my symptoms would not leave and in fact they have gotten worse as the years past. Some days the bloating is so bad that all I can do is cry from the pain an pressure. All of these symptoms would show up between 5-10 mins after eating.

My PCP ran thyroid test, full blood work up and the only thing that came back low was always Vit D and Vit B12. So they would keep telling me that I am fine.

In 2009 I started having server hive all over my body after eating, I had allergy test done and found out that I am allergic to: Chicken, shirmp, salmon, garlic, sweet potato, green beans and mushrooms. So I have removed all of those from my diet and still have the above symptoms without any relief.

In March 2012 I had my PCP order blood work for Celiac she ordered Transglutaminase IGA and Gliadin IGA and they came back NEGATIVE. So I requested to have an appointment with a GI since I started seeing blood in my stool. So the GI did an Upper Endoscopy and Colonoscopy on November 21 and found that I have Diverticulosis of the Colon and Internal hemorrhoids. I am nervous about the results because for so long my doctors would tell me that there was nothing wrong. Everything I looked up about diverticulosis did not have the symptoms that I have. I think I may be Celiac Sensitive but scared to see what my results come back with. Any advice.

[lcn1010]

I want to give the full list of my symptoms:

Depression
Stomach grumbling (after I eat or drink)
Joint Pain in shoulder and akle
Anxiety
Weight gain
Bloating
Constipation/Loose Stool
Nausea
Blood in Stool
Flatulence
Itchy Skin
Vitamin Deficiency
Fatigue
Arms and fett goes numb
Inability to concentrate
Oily Stool (most time)
Some morning wake up feeling like I have a hangover but Have not had anything to drink
Acne

[GFinDC]

Hi,

You do have symptoms that match celiac disease. Once you get your test results, either positive or negative, you can try the gluten-free diet. If your symptoms improve over 3 months or so then you know there is some kind of issue with gluten and your bodie's reaction. Symptom improvement is the goal anyway, as diagnosis is nice but not critical. Treatment is the same regardless, a gluten-free diet. for life. Welcome to the forum and I hope yuou find answers that hellp you.

[lcn1010]

Thanks for your repsonse GFinDC, I was thinking about going gluten free now and for life. Wasn't sure if I need to wait and maybe have my doctor do the full celiac panel since she only order the Transglutaminase IGA and Gliadin IGA and they came back NEGATIVE.

[GottaSki]

I agree you should remove gluten as soon as testing is complete.

I do think it would be wise to have your doctor order:

Total Serum IgA
tTG IgG
AGA IgG
DGP IgA and IgG

before you remove gluten.

Welcome to the Forum - Hope you are able to remove gluten soon as your symptoms are consistent with Celiac Disease.

Good Luck to you

[Cara in Boston]

Well, you didn't get the full panel of tests, so you really can't rule out Celiac Disease. You may be IgA deficient (did they test total IgA?). My son is NOT IgA deficient but all his IgA tests were negative too. He had a positive on the IgG tests and a positive biopsy. When your doctor did the endoscopy, did he/she take samples for a biopsy? Even then, it can still be missed.

You can start the diet without positive test results. Many people who are sensitive still test negative. If you want to try again with more blood tests, don't start the diet. Whenever you decide you are done with testing, try the diet. Be strict and try it for 3 months. If you are feeling better, you will have your answer. Think of the diet as the final test.

Your symptoms certainly sound like gluten intolerance or celiac disease.

[lcn1010]

Thanks for the reponses.

@GottaSki, just sent my doctor a message to see if he can put in order for me to go get the Full Panel done and also the nurient testing.

@Cara in Boston, I will start my new gluten free life once the doctor tell me if he will put the order in for me. I was just looking at my health records and I have been back a forth with my symptoms since 2006, not 2007. But I am just hoping to be done with it all, so I can start living again. It is some much to learn.

Thanks Guys
Latrice

[lcn1010]

My GI will not order more blood work for me, this is his response.

You recently underwent an upper endoscopy with biopsies, which is definitive for the presence of celiac disease. You do not need additional blood work for celiac testing. Please be patient while your biopsies are being examined. Your results will be provided to you as soon as they become available. In the meantime, you may stop by the lab to have your Vit.D and B12 levels checked as requested.


Latrice

[GottaSki]

Jeez - makes me sad to hear of yet another dismissive doctor - running a full celiac panel in patients that present with celiac symptoms will become common place one day.

Until then - there are three paths to choose from:

Wait for the biopsy results - if possitive re-request proper celiac testing.

Remove gluten now. Remove it ALL for no less than three months (six is better) - of course if your biopsies come back positive you have the answer - remove gluten for life.

Find a doctor that specializes in Celiac Disease and have them review your case/order the remaing blood work.

Oh a 4th option would be to pay privately to have a complete panel. USA Health Checks (I think that's their name) has a full celiac panel without AGA for $200.

Hang in there

[lcn1010]

@GottaSki- I started a fast yesterday to cleanse my systems and give my digestive system chance to rest. After my fast I will be start my new gluten free life. Thanks so much for the advice, I know this wont be easy but I will stick in there.

[GFinDC]

Sounds good Latrice. We are here to give advice and lend an ear to wail in if needed. Congrats on your decision to go gluten-free and I hope it resolves your health issues soon.

[lcn1010]

Well just got my biopsy results back and they were negative for Celiac. This is so frustrating, I am so confused. I have been fasting for the last two days and have been feelings so good. The swelling in my stomach has gone down, the anxiety is better and haven't felt depressed. After my fast I am going to still go gluten free, maybe I have a gluten intolerance.

[GottaSki]

Well just got my biopsy results back and they were negative for Celiac. This is so frustrating, I am so confused. I have been fasting for the last two days and have been feelings so good. The swelling in my stomach has gone down, the anxiety is better and haven't felt depressed. After my fast I am going to still go gluten free, maybe I have a gluten intolerance.

I know how frustrating this is. My kids all test negative and I was barely positive with total villi atrophy.

I think it is a very good decision to remove gluten - but I do worry that you have not had a Total IgA and Deamidated Gliadin Peptide IgA or IgG.

If you improve when you remove gluten you may have lingering questions and it is often difficult to conduct a gluten challenge - even if you do the challenge - there is no guarantee you will test positive -- the data you have in your blood now before removing gluten will be lost.

If you don't improve right away, you may believe that gluten is not the problem - there were months when I was not improving that I doubted my diagnosis because I just wasn't improving as doctors told me I would once I removed all gluten.

Ok...I've told you a few scenarios on the bummer side of what may happen in the coming months -- I don't have a crystal ball -- you could be one of the folks that improves gluten-free and never looks back. I do hope this is the case for you.

Hang in there

PS...make sure you get a written copy of the endoscopy report AND the pathology report - there is often important details in these reports that can be a helpful part of the whole picture.

Edited by GottaSki, 28 November 2012 - 09:22 PM.

[GFinDC]

Hi Latrice,

You could have one of these 2 newly identified conditions that react to wheat. The symptoms can be similar to celiac disease.

Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html

[lcn1010]

^{Thank you all so much for the support and information. I did get my Vit D and B12 results back and I am deficient in Vit D, but my B12 was good. I have an appointment with the Allergist today, because I have several food allergies that did not exist until 2009 I want to have blood drawn for all food and I will see in he will order the full celiac panel. But I do have a question, "I have been fasting for the last 4 days, not eating anything, will that affect the test?"}