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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.

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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.

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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

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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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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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