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Whats Wrong W/ Me....seriously?

linz7997

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linz7997 Explorer
linz7997
Posted

Hi!!

Thanks for reading this...ok...here goes.

I have always had what my family refers to as "stomach issues" since I can remember. I know that when i eat some foods (its not even a real pattern of food) I immediately have to run to the bathroom. And if by chance that day i dont have to run to the bathroom...well, thats because i am on my cycle of not going to the bathroom for 4 days at a time. I have noticed that sometimes dairy effects me...but not always...it seems to really be bothersome if i eat/drink it on an empty stomach...does that even make sense?? I alternate between horrible cramping, constipation, bloating, diarrhea pretty much every day of my life. Eating has become something that causes stress and anxiety, which of course only makes it worse. I have no energy, I literally could take a 4 hr nap at any given time. And then there are the headaches. I have gotten CAT scans and MRIs and they have found no cause for the headaches...but they are very sharp pains that last for a short time but I get many times during the day. Im pretty sure I am anemic since the slightest touch bruises me. I went to the doctor thinking I had IBS and they gave me some meds to help w/ my stomach and they did nothing accept to severly dry out my mouth. Im just getting so sick of being sick....all the time. Im sick of having to carefully plan out where I am going to be and if there will be a bathroom near by!! Its sooooo embarrassing!!! Not to mention the fact that my moodiness and lethargy is taking a toll on nearly every aspect of my life. Anyway...today is the first day that I am attempting to go gluten-free...though its hard because I think everything in my pantry is full of it !!!! :)

So there you have it...what d'ya think?? Do you think this gluten thing is my problem?? I kinda hope it is because then at least I can start to get better, since nothing else has worked!!!

Any help or anything would be greatly appriciated!!

Lindsey

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queenofhearts Explorer
queenofhearts
Posted

You could very well be Celiac from the symptoms you describe.

Congratulations on figuring it out for yourself! For some reason doctors just don't seem very clued-in about this disease. You might want to be tested now, though, before going gluten-free, because it you have been without gluten for long, the tests aren't accurate.

Believe me, this forum is the most fabulous resource you will ever find on celiac disease, as you have probably already discovered-- you'll find lots of info & moral support here. Welcome!

Leah

AndreaB Contributor
AndreaB
Posted

Yes, definately cut out all gluten and throw out what is in your pantry that could tempt you to leave the diet. If you haven't checked the main page of celiac.com do so here for the page of safe and forbidden foods. Another thing that you will want to try to do is eliminate dairy also. Go totally off of it for two months then reintroduce it to see if you have any problems. It may be that you can tolerate small amounts. I am mildly dairy allergic but not intolerant. The only dairy product I have is butter. If you find you can handle small amounts I would suggest evaluating which dairy item is most important to you.

Welcome and be sure to look around this forum. You'll find all sorts of informative and loving people here. :P There is a learning curve to this diet so don't be to hard on yourself if you have accidental glutens. Many people have also found it beneficial to switch out health care products that have wheat in them. Another thing is the toaster, if you plan on eating rice bread you will definately need to get a new toaster. There are many things but take them step by step as you can afford to. You also would need to get rid of scratched teflon pans, plastic ware etc as you have the funds to replace them.

linz7997 Explorer
linz7997
Posted
  • Author

so can i just go to a general family doctor to get tested?? is it a blood test???

AndreaB Contributor
AndreaB
Posted

You just need to ask for the celiac panel. It includes 5 tests from what I've read.

jerseyangel Proficient
jerseyangel
Posted

Hi Lindsey and welcome to the board :)

Your symptoms could point toward gluten intolerance. There are about 200 symptoms associated with Celiac Disease!

What I would suggest you do is make an appt with your doctor--ask for the complete Celiac Blood Panel--a regular set of blood tests (CBC, Metabolic Panel) will not tell you anything about Celiac. It is important for you to be consuming gluten prior to the test. This is important: if you plan to be tested do not stop eating gluten! I know it's tempting to test yourself, but to get an accurate result, you have to be on a regular, gluten containing diet right up until the test. Your family doctor can order the test for you, or you could choose to see a gastroentrologist.

If a firm diagnosis is not important to you, you could go gluten-free yourself--that's a personal decision. Just keep in mind that if you go off gluten, it will skew the result of any blood test or biopsy you have done.

Good luck! :)

AndreaB Contributor
AndreaB
Posted

Another option if you want to go gluten free now is enterolab, but it is pricey. Click Open Original Shared Link for more info.

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dionnek Enthusiast
dionnek
Posted

I would recommend a gastroenterologist - I went through 9 doctors before finally going to a GI who figured it out right away! Your symptoms do sound familiar though :) And if you decide to just try the diet (or if you do get a positive diagnosis for celiac), don't give up after a few weeks. I've been gluten-free (I think) for over 2 months now and still do not feel much better. It is a long process and a lifetime change, so don't expect results right away. It is frustrating I know to keep with it when you don't see improvement, but I look at it like everyday I find something else that I need to change, and eventually I will be totally gluten-free and my intestines will be healed :)

mmaccartney Explorer
mmaccartney
Posted
Another option if you want to go gluten free now is enterolab, but it is pricey. Click Open Original Shared Link for more info.

I have to disagree, I did not find Enterolab to be pricey. Sure it costs $360 for the celiac panel "complete" however I paid more for my 2 endoscopies and colonoscopy let alone all the other tests I was given and had to pay 20% of......I wish I would have gone to Enterolab in the first place like I was considering....I think I paid more in the long run with my Dr and his tests....

jerseyangel Proficient
jerseyangel
Posted
I have to disagree, I did not find Enterolab to be pricey. Sure it costs $360 for the celiac panel "complete" however I paid more for my 2 endoscopies and colonoscopy let alone all the other tests I was given and had to pay 20% of......I wish I would have gone to Enterolab in the first place like I was considering....I think I paid more in the long run with my Dr and his tests....

I did too! The 20 per cent that we had to pay (endo and colo, pathology and blood work) came to more than if I had just done the Enterolab. The problem is that I didn't know about Celiac, or any of this until after I was diagnosed! If I had it to do over, knowing what I do now, I would have gone for the Enterolab testing--in addition to it being cheaper, it would have given me more information. The Celiac Blood Panel, if covered by insurance is a good place to start, though--Lindsey had said that she was considering going off gluten, so I took that as she was still eating it.

AndreaB Contributor
AndreaB
Posted

Patti and Michael,

I have found a lot of complaints about the price of enterolab which is why I stated that. I am relieved to have them available and didn't even go through doctors so I wan't aware of what insurance covered or didn't. I have read on the slide presentation that enterolab has that was posted by someone else on some enterolab threads that they will start offering testing for allergies although I don't know when. I had all the tests done that they offer and was pleased with the quality of customer service as well. :)

jerseyangel Proficient
jerseyangel
Posted

Andrea--Probably because some insurance plans are much better than others! The one we had up until last year would have covered all of my testing--I only would have been responsible for the office visits. I guess my opinion would have been different in that case! Leave it to me to get so ill and need this kind of testing after we had to go onto this other plan (through my husband's company) Hindsight is always 20/20 :D

Sharon1422 Newbie
Sharon1422
Posted

I understand exactly how you feel. I am new here. I'm actually going for my biopsy on Thursday. I've already had the blood test done and have for sure test positive.

I have had eptopic pregnancy. Several ultra sounds. They decided that it was IBS so I started taking that medication which helped for several months.....I thought.....but then they didnt work at all, so......I go online and get some cleansing pills....that worked for a little bit.... Then I decided that something else is wrong so I just searched out another doctor cause the first one just had no personality and I had no confidence in him.

He also did a Colenoscopy and found out I also have adhesions from the eptopic pregnancy.

I was getting bloated on the smallest meals.....like I had a twelve course meal and feeling like I couldnt breath. Its been a long haul to find a doctor that actually new what test to take.

I am three weeks into my gluten free diet and already I am feeling better.

I know how you feel, dont give up you will find a doctor that will help.

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      How many grams is there in one slice of wheat bread?

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      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Confused with test results

      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
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      By trents · Posted

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    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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