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JenC

Please Help Me Understand Celiac Vs. Gluten Intolerance

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I would have sworn I have Celiac Disease based on my symptoms, but my genetic testing and antibodies come back negative. To be honest, I was hoping that I did have it, because it would be easier for me to stay gluten-free if I had a disease. (I know, I'm really messed up.)

I do have Hashimoto's, I am now insulin resistant and my adrenal system is really fatigued. My MD and ND both recommended I avoid gluten, but I'm having a hard time sticking with it. The few times I've stayed off for a week or so, I started to see improvements that make me definitely believe they're right about me being at least gluten intolerant.

I guess my question is, I know the technical difference between celiac disease and GI (the villi), but are all of the other symptoms and ramifications of consuming gluten the same? If I continue to eat gluten am I putting myself at risk for the same health problems someone with Celiac faces if they don't quit?

Thank you!

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If you are gluten intolerant rather than celiac and you eat gluten you are likely to have many of the same horrible symptoms such as diarrhea, bloating etc but you won't have to deal with the long term consequences of eating gluten such as infertility, osteoporosis, bowel cancer etc.

I feel the main difference when it comes to every day life is that whilst you will stay have to stay away from gluten in order to feel healthy you will not have to worry about cross contamination issues the way a celiac does. A little gluten isn't going to do long term damage the way it would to me but you would still want to eat mostly gluten free to avoid feeling bad.

Hope this helps a little,

Laura

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Did they do an endoscopy?

And what genes did they test for?

No endoscopy. I'm a wuss. My MD didn't think I had Celiac, but he does think gluten is poison and I should avoid it. Genes... I can't find where I put my paperwork, but it was the two on the typical celiac gene panel.

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but you won't have to deal with the long term consequences of eating gluten such as infertility, osteoporosis, bowel cancer etc.

I think I was really hoping that the long term consequences are the same for the two, because it'd be easier for me (an emotional eater) to stick with gluten-free if the consequences for not doing so were so obviously dire. Lol.

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I think I was really hoping that the long term consequences are the same for the two, because it'd be easier for me (an emotional eater) to stick with gluten-free if the consequences for not doing so were so obviously dire. Lol.

If you're going to play around with eating gluten, you really need to get the endoscopy to be sure you're not celaic.

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odd. double-post.

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My mom was diagnosed with Hashimoto's Thyroiditis 20 years ago. She has been under the impression that it was merely a Autoimmune Disease that would eventually completely destroy her Thyroid. The Endocrinologist never told her that it would go from Hypo to Hyper. She has been ill informed of this disease from it's onset. In the last several months my sister is now showing signs of Hashimoto's. Recently I believed that my husband was Gluten intolerant however in the last few months I am CONVINCED that we both have Celiac Disease. The more I read about Celiac the more I feel that my mom, sister and myself all have it! It has effected us in different levels with different symptoms. I have always been told that I am Anemic, I have never been able to have children, I get gas from EVERYTHING!!!! I have horrible sinusitis problems and suffer headaches. The fatigue is awful. When I was reading about Celiac to help my husband I was shocked to see the link to Hashimoto's. My mom has really suffered with this. She has every symptom times one hundred! She is 62 and still working full time. She tries to lead a normal life but she is miserable. I wish that her Doctor would have told her of the connection and made a diagnosis. I feel that her life would have been easier. I have been working on my sister to get diagnosed with not only Hashimoto's but Celiac. My husband is going to the Dr on the 21 and hopefully he will be tested for Celiac. He is 40 and we think that he now has Rheumatoid Arthritis. He is too young to be as old as he feels. That is just one of many issues that he now has. From his lack of memory, ulcers, pancreatic issues, and so on. We are giving 100% gluten-free a real effort!!!

Jen you need a second opinion. Get a endoscopy REALLY..I don't how old you are but don't suffer with this!! You owe it to yourself to stay away from Gluten!!

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I think I was really hoping that the long term consequences are the same for the two, because it'd be easier for me (an emotional eater) to stick with gluten-free if the consequences for not doing so were so obviously dire. Lol.

I am a diagnosed celiac. I showed a false negative on the blood work and don't have one of the two most common celiac associated genes. Some would consider me to wear the label of gluten intolerant because of that. If you want to see the possible long term consequences of consuming gluten with the 'gluten intolerant' label instead of the celiac one just look at my signature.

Both are just as serious and can have serious issues and you need to be just as strict no matter what label you are given. There are high rates of false negatives on the blood tests and the biopsies so the best test of all is whether you recover when following the diet strictly.

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My mom was diagnosed with Hashimoto's Thyroiditis 20 years ago. She has been under the impression that it was merely a Autoimmune Disease that would eventually completely destroy her Thyroid. The Endocrinologist never told her that it would go from Hypo to Hyper. She has been ill informed of this disease from it's onset. In the last several months my sister is now showing signs of Hashimoto's. Recently I believed that my husband was Gluten intolerant however in the last few months I am CONVINCED that we both have Celiac Disease. The more I read about Celiac the more I feel that my mom, sister and myself all have it! It has effected us in different levels with different symptoms. I have always been told that I am Anemic, I have never been able to have children, I get gas from EVERYTHING!!!! I have horrible sinusitis problems and suffer headaches. The fatigue is awful. When I was reading about Celiac to help my husband I was shocked to see the link to Hashimoto's. My mom has really suffered with this. She has every symptom times one hundred! She is 62 and still working full time. She tries to lead a normal life but she is miserable. I wish that her Doctor would have told her of the connection and made a diagnosis. I feel that her life would have been easier. I have been working on my sister to get diagnosed with not only Hashimoto's but Celiac. My husband is going to the Dr on the 21 and hopefully he will be tested for Celiac. He is 40 and we think that he now has Rheumatoid Arthritis. He is too young to be as old as he feels. That is just one of many issues that he now has. From his lack of memory, ulcers, pancreatic issues, and so on. We are giving 100% gluten-free a real effort!!!

Jen you need a second opinion. Get a endoscopy REALLY..I don't how old you are but don't suffer with this!! You owe it to yourself to stay away from Gluten!!

Please be aware that to test for celiac you have to be consuming gluten. If you and your husband have been gluten free you need to go back to eating gluten for about 3 months before testing and even then you could have a false negative on testing with both blood and biopsy. After the testing is finished do give the diet a good strict try for at least a couple months no matter what the results.

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I am a diagnosed celiac. I showed a false negative on the blood work and don't have one of the two most common celiac associated genes. Some would consider me to wear the label of gluten intolerant because of that. If you want to see the possible long term consequences of consuming gluten with the 'gluten intolerant' label instead of the celiac one just look at my signature.

Both are just as serious and can have serious issues and you need to be just as strict no matter what label you are given. There are high rates of false negatives on the blood tests and the biopsies so the best test of all is whether you recover when following the diet strictly.

Thanks. I guess I just thought since I don't have either of the two genes most commonly associated, I was unlikely to have it. Maybe I need the biopsy. :( I'm terrified of it.

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Thanks. I guess I just thought since I don't have either of the two genes most commonly associated, I was unlikely to have it. Maybe I need the biopsy. :( I'm terrified of it.

Unlikely to have something is not the same as no chance at all. About 1 in 100 celiacs don't have the common genes.

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Unlikely to have something is not the same as no chance at all. About 1 in 100 celiacs don't have the common genes.

Good point.

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Thanks. I guess I just thought since I don't have either of the two genes most commonly associated, I was unlikely to have it. Maybe I need the biopsy. :( I'm terrified of it.

You don't need to be terrified of the biopsy. You will be well sedated and will not remember any of it. Most of us have no problems at all with it so do talk to your doctor to set your fears at ease. There are also some doctors who will now diagnose with positive blood work and recovery on the diet so that might be worth asking about also.

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Yeah, you definitely don't need to be terrified of the biopsy. you will be fine. Just make sure you take sedation because that way you won't remember anything about it. I went into the operating theatre, was given sedation (by a very cute doctor) and then the next thing I remember was waking up with my dad next to me. :)

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Yeah, you definitely don't need to be terrified of the biopsy. you will be fine. Just make sure you take sedation because that way you won't remember anything about it. I went into the operating theatre, was given sedation (by a very cute doctor) and then the next thing I remember was waking up with my dad next to me. :)

Thanks. I have serious anxiety issues, but if I can convince a doctor to order one I'll just force myself to do it. I really want to know.

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You already have one autoimmune disease which puts you at risk for getting another. Eating gluten makes that more likely to happen.

You might like to look at the autoimmune form of the Paleo diet. Robb Wolf's website is a good place to start.

Also, you say you are an emotional eater and I just want to mention that I am not anymore...once my diet cleaned up...my relationship with food got a lot better. In other words, for some people, emotional eating and maybe other food issues are a symptom.

I don't think the medical pros have a clue about intolerance yet; they've only just determined that it exists and they are still learning a lot about celiac too. Scientific progress is slow.

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You already have one autoimmune disease which puts you at risk for getting another. Eating gluten makes that more likely to happen.

You might like to look at the autoimmune form of the Paleo diet. Robb Wolf's website is a good place to start.

Also, you say you are an emotional eater and I just want to mention that I am not anymore...once my diet cleaned up...my relationship with food got a lot better. In other words, for some people, emotional eating and maybe other food issues are a symptom.

I don't think the medical pros have a clue about intolerance yet; they've only just determined that it exists and they are still learning a lot about celiac too. Scientific progress is slow.

Thanks for this. I've decided I need to just suck it up and be gluten-free, as regardless of whether it is celiac, I have to be diligent. I would be elated if my emotional eating issues eased as a result of being gluten-free!

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I would have sworn I have Celiac Disease based on my symptoms, but my genetic testing and antibodies come back negative. To be honest, I was hoping that I did have it, because it would be easier for me to stay gluten-free if I had a disease. (I know, I'm really messed up.)

I do have Hashimoto's, I am now insulin resistant and my adrenal system is really fatigued. My MD and ND both recommended I avoid gluten, but I'm having a hard time sticking with it. The few times I've stayed off for a week or so, I started to see improvements that make me definitely believe they're right about me being at least gluten intolerant.

I guess my question is, I know the technical difference between celiac disease and GI (the villi), but are all of the other symptoms and ramifications of consuming gluten the same? If I continue to eat gluten am I putting myself at risk for the same health problems someone with Celiac faces if they don't quit?

Thank you!

We have a lot in common. I tested negative to the blood tests, my doctor didn't give me the option of a biopsy (in retrospect, I should've pushed it but I live as if I have celiac so the outcome wouldn't be any different). I'm insulin resistant too. The gene test showed I didn't have the common genes (I can't remember what they are, but for the purposes of doctors here I was determined to be not celiac, but the doctor I was seeing also thinks gluten is poison).

Do you get neuro symptoms? They were what determined me to be very strict about being gluten free. They really scare me. I do understand about wishing you had it as a way of helping you to stay on the diet. But you can, anyway. I've always struggled with emotional eating too and a "little bit" of anything is a terribly slippery slope. I don't know what you're doing to get your insulin resistance under control, but working out my triggers (anything refined carb) really made me see that I wasn't eating emotionally so much as a slave to a body chemistry glitch that made me desperate for more and more carbs. A paleo-type diet is great, though I don't go so far (I like legumes, they don't give me any grief and I eat lactose-free dairy).

In the early days of going gluten free I had to say no no no no never as I walked passed a lot of foods. I never even gave myself the slightest hint that eating something with gluten would be a possibility ever again, whereas in the past when I was just trying to lose weight I could wear my resistance down with arguments of 'a little bit won't hurt' and 'everything in moderation'. Maybe that would help? Eventually it did get easier :-)

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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