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chatrbug

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chatrbug Newbie

i hope im posting in the right place. i have not had a formal diagnosis, but in reading everything...well... i dont see how my diagnosis could be wrong. not like i want to be sick. my background... for the last 3 yrs i have had sores on my scalp, an upset stomach and diarrhea. my first dr blew it off as stress from having 4 children, my second dr said it was heartburn and prescribed pills for that, yet another dr said it was from my blood sugars being out of whack, thus putting me on on the american diabetic diet and also changing my thyroid meds. followed the diet to a T and only got sicker, and gained 10lbs from it (gained 20lbs while on weight watchers). took myself off the diet, because the dieticians couldnt promote not eating gluten. in paying attention i was figuring out just what was making my stomach upset. went to another dr, he did the blood tests for the celiac and gluten intolerance. all came back negative. gave me some pills for when my stomach is upset. what id idnt realize before he had me take the test was i have been very limited to no gluten...now im reading that can mess up the test, but insurance and the dr will not run the test again. so sunday and monday i decided to do a test (as i read above) i went no gluten and felt absolutely wonderful, only using the bathroom once instead of always running to make it. no cramps, very little upset stomach. wide awake, actually got the house deep cleaned. wasnt hitting snooze after 10 hrs sleep. so last night i have 3 bites of a muffin and a bite of lasagna...30 minutes later i was cramping so bad, ended up throwing up what i had eating, and had diarrhea. bedtime came early for me and i was feeling very cranky and grumpy (compared to my very happy mood earlier). this morning i still have the diarrhea and the upset stomach..but i noticed i usually do for about 24hrs after i eat the gluten. my head is full of sores now too. oh boy do i hate those sores..itch so bad! those will take another 3-4 days to go away. i too said because all the tests came back negative, then this isnt what is going on. yet the gluten sends my body into a rollar coaster ride that i hate. trying to get those around me (especially my dh) to understand that i cant control this is difficult at times. but he is starting to notice the days i eat gluten and the days i dont.

why is it going to kill someone if they go on diets like atkins or south beach, yet when you say im gluten intolerant or celiac they are like...oh well in that case its perfectly safe. not sure what the difference is but find it interesting. and i did atkins for 6 months, but slowly started adding in the glutens (not on purpose, just stopped paying attnetion), this time i wont stop paying attention!


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skoki-mom Explorer

It does sound like there is something gluten related going on with you, although whether it is celiac disease, wheat intolerance or allergy does not seem to be clear. If you feel better, I'd stick with it!

I can't comment a lot on the low-carb diets, as I have never been on one, but from what I understand, Atkins advocated extremely low carbs in all forms and encourages intake of some foods that are very high in fats, like red meats. The celiac disease diet is not necessarily a low carb diet since you can still eat starches like potato and rice to name 2. In my opinion, the rest of the celiac disease diet should be pretty well balanced to include not only meats but lots of fruits and vegetables. I worry about not getting enough fibre in my diet so I try to eat beans and stuff like that. I have not increased my meat intake on my gluten-free diet, but I have increased my fruit/veg intake (which was already pretty generous, actually) just because they are easy, portable, and naturally gluten-free.

Likely not too helpful. I hope you are feeling better soon.

nettiebeads Apprentice

Definitly sounds like celiac disease to me. Especially if your D was pale, foamy, floated and really really stinky. That's from the malabsorption caused by celiac disease. I don't know if the D is any different for wheat intolerance or not, since I haven't had that. Let your husband know that YOU WISH THIS WAS IN YOUR HEAD!! then you wouldn't be so sick! Has he read anything about celiac disease? It's something I sure wouldn't wish on anybody, but at least there is this great forum where everyone understands and is helpful and we can discuss anything. Literally. Just go gluten-free; could you switch drs to one who would dx you as celiac based on the diet challenge, probably DH, (he'd have to se that, I've never experienced it) and discription of your D?

And as far as diets go, my dr. doesn't like the Atkins - too high in fats. My dd has done it and it worked for awhile for her. The beginning stages are to withdraw one from the addiction of carbs and sugar. That really isn't a bad thing, but a leftover I have from celiac disease is a low tolerance for fats.

Claire Collaborator
I can't comment a lot on the low-carb diets, as I have never been on one, but from what I understand, Atkins advocated extremely low carbs in all forms and encourages intake of some foods that are very high in fats, like red meats. 

<{POST_SNAPBACK}>

Hi skoki-Mom - My observation of friends, neighbors and family members on Atkins is that there is nothing wrong with the diet - it's the people on the diet that are the problem. They don't use common sense. Eliminating carbs is one thing. Thinking you can then 'tank up' on high fat foods - stuff with ice cream and eat fatty meats - by the pound - is ridiculous and likewise dangerous to your health. I see people using Atkins as a license to indulge. I'm sure not everyone on Atkins does that but certianly a good many do if what I have seen is any example. No sense of moderation displayed at all. Some doctors recommend it for short term only - up to two months. Whatever - people just don't think. Claire

chatrbug Newbie

thanks all :) my D is very sticky, and explosive (you know..i dont mind describing what my childrens looks like...but its rather TMI with me lol). sometimes it looks like hair mousse..only not the pretty white colour!

im having a rough time finding a dr that knows anything about celiac. its very annoying. im calling around to find a GI dr in my area that will take my insurance. and just go to that route.

i did atkins for 6 months. but i didnt eat all the high fat that people seem to think you can eat. i did a lot of chicken and shrimp (can eat fish as im allergic), i also didnt do the cheese (lactose intolerant--yes im allergic to a lot) all the time. i ate tons of salads and broccoli. fruit wasnt allowed at first, but when it was, that was my sweet. i tend to stay away from any frankenfoods like the chocolate bars and the mixes. though a few were nice for those days that everyone was eating cake, and i wanted some too :) when my dh did atkins he ate more veggies and salads then he ever does when not on it. so i cant complain there. and i should say that those 6 months were wonderful! normal menstrual cycles, no sores in my heads, my stomach wasnt upset (well it was if i ate some of those frankenfoods the sweetners in them get me! but i bet there was other things in there also). and i lost 30lbs. of course ive gained it all back, and then some (if i eat several servings of breads, cookies, anything floury... i can gain 10lbs overnight). now to just figure this all out!

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    • Judy M
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    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
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