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Questions Re: Symptoms


nama shivaya

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nama shivaya Explorer

Are these symptoms typical of either celiac disease or other food-related sensitivities?

Migraine (accompanied with upper sinus drainage)

Anxiety

Lump in throat

Gas (burping and "wind". Wind does not expel easily)

Stomach pains (small, sharp here and there)

Intestinal bloated feeling

Weakness in legs and arms (some tingling and muscle twitches)

Also, I can eat a sandwich, a bowl of oatmeal or a pancake and be full all day!!! When I eat only meat and veggies, I seem to digest them quickly and feel OK.

For the past week I've been cutting out all gluten-containing foods but my tummy/guts still feel tender and bloated. I'm keeping a journal of everything I eat in relation to physical and emotional symptoms, but am not coming up with any super-clear connections (besides corn/wheat/oats/rice flour). Also, I'm on Bactrim antibiotic for some folliculitis and when I take that pill I get a lump in my throat and immediate sinus drainage.

I have to say that my doc experience has been really frustrating! Neuro is pursuing an MS dx, PCP is just too dang busy to focus on all my problems. I've seen an ENT who wants to do allergy skin prick testing. Testing for allergies seems a good way to go, but skin prick for a few things? Perhaps my money would best be spent doing the Lame Advertisement for 150 different things.

Anway, this seems so overwhelming that I'm wondering if I could get some input from those of you who have been here, done this.

Thanks!!!!!


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CarlaB Enthusiast

Celiac can be causing the symptoms you describe. It's really hard to get 100% of the gluten out of your diet right away, so that may be why you aren't feeling better ... plus it takes time to feel better.

If you end up with an MS diagnosis, be sure you test for Lyme. The symptoms are just about the same and the steroids they give you for MS is REALLY bad for Lyme .... makes it MUCH worse. They really should make it part of MS testing to rule out Lyme, but the medical community is trying to deny that Lyme even exists!

I should add, that celiac also has similar symptoms. My Lyme doc rules out celiac before he diagnoses Lyme. I really hope that it ends up being a gluten problem for you and not Lyme or MS.

Keep researching ... if it wasn't for my researching I never would have found either my Lyme or my gluten intolerance! My docs never thought of either possibility!

nama shivaya Explorer

Thanks, Carla. I had a ton of blood drawn this week (at my insistance). My PCP added Lyme to the list as well as B12, Folate, IgA EMA, serum IgA and Anylase/Cipase (sp?). I've been only really gluten-free for maybe a week, so am thinking it shouldn't affect the tests.

You seem to be a very vocal member of this forum, and I want to personally thank you for taking the time to help those of us who are searching for answers!

Best,

Nama :)

CarlaB Enthusiast

Nama, you're welcome. I still feel pretty bad, so I spend some time here answering questions from my laptop. You can tell when I'm having a good day because you won't see me much!

I'm sure you'll get more answers to this question during the week. The weekend is slow.

Hopefully, you will get an answer from this round of tests!

Rachel--24 Collaborator
Thanks, Carla. I had a ton of blood drawn this week (at my insistance). My PCP added Lyme to the list as well as B12, Folate, IgA EMA, serum IgA and Anylase/Cipase (sp?). I've been only really gluten-free for maybe a week, so am thinking it shouldn't affect the tests.

Nama...please be aware that there is no test available to rule out Lyme at this time. The bloodtests dont always detect Lyme for many different reasons. IgeniX lab in CA is the lab with the most sensitive test...its the best available.

Other labs which Dr.'s use have less than 60% sensitivity and miss more cases of Lyme then they pick up. A Dr. who is knowledgeable about Lyme would know this for sure.

If the Dr. who runs your test tells you you dont have Lyme based on negative bloodwork.....especially coming from a lab which is not Igenix....you should not rule it out. When there is a possibility of MS being diagnosed....Lyme should be looked at in every way before making any decisions about treatment for MS.

The two diseases are impossible to tell apart and the wrong diagnosis has hurt many people who've actually had Lyme. Steroids weaken the immune system and drive the infection deeper into the tissue....making a bad situation a whole lot worse.

I'm glad you are being persistent....you are your own best advocate. :)

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I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
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