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LexiBrowni

How To Get People To Understand...

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Hi:) My name is Lexi, I'm 18 and I have been gluten free for 4 months now. I knew at first it would be really difficult to live this lifestyle successfully (due to the fact that gluten was a HUGE part of my diet and my entire family is fine and therefore it would still be in the house obviously), but it really hasn't gotten any easier.

I have actually done a great job of staying away from gluten. I think I've only cheated once or twice and then swore I never would do it again because the side effects suck. My symptoms seem to be getting worse though when I do get "contaminated." Does anyone know why that is? My family doesn't understand how gluten affects me and expects me to be fine within an hour... my symptoms can last weeks.

Also... the main point of this post is to ask those who have figured this whole thing out, how they got their family members and friends on board? My family constantly forgets that I can't eat a lot of things. My mom will cook my favorite meals and I just stare at them so unbelievably hungry, but knowing that I can't/shouldn't touch it. And then we'll go to some Italian restaurant... self explanatory. I can have a salad... maybe soup... or not eat. Also, my mom continues to encourage me to eat salads when we go out for my meal. I don't think she understands that salads really don't fill anybody up. I'll be hungry again in like 15 minutes! I AM CONSTANTLY HUNGRY. So how do I get them to understand what I'm going through and to be supportive in this change I am trying so hard to make? Please help! All advice will be appreciated:)

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Were you diagnosed with Celiac or Gluten intolerance? I ask because it sounds like your mom thinks your diet is a choice not a medical need.

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Side effect symptoms seem to get worse the longer you are gluten free. I didnt have any stomach problems before I got diagnosed, and now if I eat something by accident, then I feel it much worse now - and I'm only three and a half months in!!

I agree with the above comment - it seems like your family thinks this may be a choice, unless you've had the tests done, if so, I apologize. If you didnt have the blood panels, maybe showing them elevated anti-body levels will "prove" that there IS something wrong. But remember, the tests wont be as accurate since you've been gluten free for four months. What if you picked a restaurant with a gluten free menu the next time you go out as a family? Maybe if your family sees that there are restaurants out there that have both gluten free and "regular" food, they may not give you as hard of a time.

Also, could it be that maybe your parents feel guilty? My mom felt super guilty that I was diagnosed and she's not even sure if she was the one who passed the Celiac to me. Maybe this is a form of denial for your mom? "If we eat at normal Italian restaurants, then everything is fine and we dont have to think about it." Maybe its far fetched, but its the first thing that popped into my mind. I'm so sorry that you dont feel validated. Please continue to come onto the forum for support, I have found it extremely helpful..

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Hey Lexi,

I'm 19 and self diagnosed and I find the diet hard sometimes even with my family's support so I feel for you!! You probably have already done this but if you havent Maybe sit down with your family and explain to them how sick you feel when you eat gluten.. Go food shopping with ur mum or dad and check out the gluten free section, at the start I used to cook my own dinners now we cook dinners that can also be gluten free, if they have like a pie or something though mum will get me some steak and veggies for dinner.

It will get easier!! You just have to get your family to see how important it is that you don't eat gluten, and u can't eat salads all the time!!! And good on you for not cheating, I don't either cause of how sick I get, it does suck!!!

I really hope things get better for you!!

Xx

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Lexi, I agree with Kareng that it will be helpful for us in replying if we know if you have Celiac, are gluten-intolerant, and whether you are self-diagnosed or have had blood tests and/or endoscopy?

If you are self-diagnosed, your parents may be in denial or may not want to deal with it, or simply may not be taking it seriously. It's hard for me to imagine that if they did take it seriously they wouldn't help provide food that you can eat.

If I were you, I would ask to accompany whoever does the grocery shopping for your family so you can make sure you have plenty of options, including snacks and some protein bars, or add items you know are safe to the list. When your family goes to a restaurant where you know or suspect you can't eat, I'd eat something before or after - don't settle on a crappy salad if that's all they have - seeing you sitting there with no food while they eat will send a pretty strong message. We've wound up a few places I couldn't eat anything since my diagnosis, but that's pretty much been because of very unique circumstances (going to family gatherings for funerals where I'm unfamiliar with the city and didn't really know the deceased but am there to support family, not the right time for my food needs to dictate where a large group goes!) - otherwise i'm getting pretty good at piping up and saying "I can't/don't think I can eat much/anything at that restaurant, how about _______ instead?" There are a few frozen meals that are gluten-free that are actually pretty decent, nutritionally too, by Amy's and a few other brands - it would be good to keep those on hand for when dinner isn't a good choice for you. It might also be good if you've got room to cook a big pot of soup or pan of enchiladas/lasagna/your favorite food and split it up into portion sizes and freeze for when you don't have anything easy on hand and whoever made dinner that night forgot about you.

Generally, though, I think it's important to have them really understand the issue. Ask them to sit down with you and your doctor to discuss the implications. If you have Celiac disease and continue to eat gluten, you are many times more likely to develop a host of problems, including many cancers, than the rest of the population. If you cut it out, your risk goes down. That means no cheating, either!

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FWIW, if you learn to pick your salad's carefully, you CAN fill up on them. Salads with cheese, meats, eggs, and beans are in particular going to be the most filling.

That said, four months is a short time compared to 18 years, or even thirty or forty years when you consider how long your parents haven't even considered that a food could make someone particularly ill. If it helps, get a note from your doctor explaining what happens. Or talk to them about how "that little bit of wheat sets off my immune system - like when you get a bad cold - and damages my intestines. only this lasts for weeks!" Eventually, though, you may have to realize that they won't ever get it. I wouldn't give up just yet, but realize it may take a lot of time and a lot of patience and educating on your part.

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Writing a letter to my family explaining the situation seemed to help them to finally "get it." They are being much more understanding now. There's also being a broken record, and just giving them time to adjust to the idea.

I hope you're eating enough! If your mom won't cook meals that you can eat, you may need to negotiate a situation where you do at least some of your own cooking. On a side note, I have noticed that I have a much larger appetite since going gluten/dairy free. I used to have very little appetite at all, now I eat like a horse.

Good luck at getting them to understand. In the meantime, this is a great group of people to complain to.

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I do not know your symptoms/dx history but...is it safe to assume that your mom has been witness to your "sick"?

Professionally dx or self-dx...I think you're still going to find that folks' eyes just glaze right over when you try to get them to "understand"...let's face it, there are doctors who just don't "get it"...

However... I've been thinking on it and I have an idea...

Why don't you go through the forum and find some posts that tell some of the stories of the members here...how they were feeling, how hard (if at all) it was to be dx (diagnosed), what they did, how their lives have improved, etc, etc... Copy/paste them and print it out...then sit down and read them to your parents... Even if the symptoms aren't all the same, it could be a real eye opener for them... I've found some pretty amazing stories in here...they are made much more so by the fact that almost all of them were hard/long to be dx...if ever. Perhaps these very real and sometimes pretty darn scary personal stories would have some impact...??? I would, also, make sure they understood how, if treated lightly, you could have even worse issues develop (other autoimmune disorders, neurological, crippling joint pain, etc.

I think it's, also, a huge eye opener for them to hear about so many others going through the same thing... This "gluten thing" is very hard for most folks to get a handle on...

In fact...a stick thread with ONLY these types of stories (mini gluten bios) would probably be very helpful for others coming into this forum...just an idea...

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Hello.... I am new to the forum. I was just diagnosed with Celiacs in June 2012 by Biopsy and Blood Panels. I too, am experiencing worsening illness with a gluten free diet. In fact, I never felt so sick in my life. And hungry. I was shocked with my Diagnosis as I didn't suspect anything of a gastric nature really. I have been ill for several years with many complaints, mostly overall feeling of NO ENERGY and not able to explain whats wrong but knowing something wasn't right if that makes sense. I then did develope in March stomach complaints and my doctor suspected a cyst. I had an ultrsound which detected a hemmoraghic cyst on my ovary. I was sent to an OBGYN. By that time, I had extreme bloating. She said the bloating was not the cyst and sent me to a GI. I had a EGD done and they found intestinal damage which led to Celiac finding. Anyway, I went gluten free of course. I have become so sick. I've lost 20 pounds. My throat has been sore for months, my tongue sore and goes from greenish coated to red and burning. My gum bleed on and off. My hands and feet tingle. I have severe headaches and my vision is going bad. I just recently started having chest pains. I went to the ER. They kept me over night and made me do a stress test which showed a healthy heart and no cardiac trouble. I have had extenstive blood workd done for auto-immune diseases and it came back fine. Friday the chest pain returned and has not gone away.

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Really?... I am so sad to hear about all this... you must be very scared and frustrated...

I am far too new to give you any sound advice... I believe you would benefit from speaking with some of the experienced folks here... Might I suggest that you start a new thread? It seems like you would get more response to your specific concerns...

Please hang in there... :)

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Hello.... I am new to the forum. I was just diagnosed with Celiacs in June 2012 by Biopsy and Blood Panels. I too, am experiencing worsening illness with a gluten free diet. In fact, I never felt so sick in my life. And hungry. I was shocked with my Diagnosis as I didn't suspect anything of a gastric nature really. I have been ill for several years with many complaints, mostly overall feeling of NO ENERGY and not able to explain whats wrong but knowing something wasn't right if that makes sense. I then did develope in March stomach complaints and my doctor suspected a cyst. I had an ultrsound which detected a hemmoraghic cyst on my ovary. I was sent to an OBGYN. By that time, I had extreme bloating. She said the bloating was not the cyst and sent me to a GI. I had a EGD done and they found intestinal damage which led to Celiac finding. Anyway, I went gluten free of course. I have become so sick. I've lost 20 pounds. My throat has been sore for months, my tongue sore and goes from greenish coated to red and burning. My gum bleed on and off. My hands and feet tingle. I have severe headaches and my vision is going bad. I just recently started having chest pains. I went to the ER. They kept me over night and made me do a stress test which showed a healthy heart and no cardiac trouble. I have had extenstive blood workd done for auto-immune diseases and it came back fine. Friday the chest pain returned and has not gone away.

I'm so sorry to hear that you're feeling so sick. What are you eating? Do you know if you're deficient in any vitamins? There could be other food sensitivities that have popped up since your diagnosis and you will have to remove them and slowly add them back in to see if you're having a reaction. My diagnosis was a total shocker too and I too have felt worse since my diagnosis and going gluten free - I'm chalking it up to the fact that my body has to readjust to the new diet. Did you gain weight before going gluten free? I've begun seeing a nutritionist who is experienced with Celiac and its making the world of a difference. She has me on sort of a "recovery diet" where I drink home made broths and doing a lot of things to ease my GI tract while giving myself nutrients too. I'd suggest trying to find someone that could help you with this too. I also became more hungry since going gluten free. I think its our bodies telling us, "Wait, you're feeding us stuff we can actually use now?!?! Keep it coming!!!"

I am not an expert either and am almost as new at this as you are. There are tons of people who are so knowledgeable on this site and I urge you to keep posting, you will get a lot of great help and support! Please let us know how you're doing!!

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    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
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    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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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.
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    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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