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I have Gastroparesis (paralysis of the stomach) and I refuse to accept that it is idiopathic, meaning there is no identifiable cause, just live with it. For the last year or more I have been taking a combination of 6 medications- 3 types to help go to the bathroom, 1 for upper digestion, 1 for nausea and 1 for GERD. On the evening of Jan 2nd I started reading about gluten and seeing how I had at least 32 of the common symptoms, I decided that evening I would eat gluten-free food. I had an avocado with a little bit of miracle whip. The avocado (which with it's 4g of fiber and 23g of fat) should have made me very sick but surprisingly I had no ill feelings from it at all and I could actually feel my stomach digesting on its own for the first time in a loooong time! I woke up the next morning with a lot of energy and significantly less bloating! I already had a GI appt scheduled for the afternoon of the 3rd to tell the PA that 5 of the medications were not working, so I continued the gluten-free up until the appointment.

I talked to my PA and she was amazed at how great I felt and encouraged me to try the gluten-free diet for one month. We both agreed not to do any tests because the diet is the one sure way to know there's a food intolerance (especially with the chance of testing negative for Celiac and I could still have the intolerance). I did my daunting first gluten-free shopping trip last night. I am starting day 3 and once again, woke up this morning feeling great for the most part. My stomach isn't bloated and I have a lot of energy.

That being said, I ate some potato chips last night (labeled gluten-free) but were high in fat and did have an upset stomach. I'm thinking it was the type of fat used in the chips. Also, I did read about withdrawal headaches on other forums- I had a headache all afternoon yesterday and had to take ibuprofin.

Ironically, the sicker I got over this last year, the more bread and butter I ate. I dramatically increased my carbs/gluten foods because they are considered easier to digest than fats/veggies/fruits/meats/nuts..etc.

Is there a list somewhere of some of the initial negative side-effects of going gluten-free? So far I think it's just been the headache. Any other advice is welcome as well!

Thanks for reading and have a good day! :)

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Yes, I am newly diagnosed too but still having to eat glutin because my biopsey isn't scheduled till Jan 10. Only experiencing very itchy symptoms but have had the blood test and tested VERY positive. I also would be interested in negative side affects from going glutin free on Thursday. I have also craved honey wheat pretzels in the past year & increased my love of all things bread. I soudn like a real addict...lol :)

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Yes, I am newly diagnosed too but still having to eat glutin because my biopsey isn't scheduled till Jan 10. Only experiencing very itchy symptoms but have had the blood test and tested VERY positive. I also would be interested in negative side affects from going glutin free on Thursday. I have also craved honey wheat pretzels in the past year & increased my love of all things bread. I soudn like a real addict...lol :)

Good luck with your biopsy! My GI ruled that out as well because he already did an upper GI and didn't do the biopsy then so they're not going to repeat it. I feel like a real addict too cause I came home from my appt searching for anything to eat that had no gluten and it was very difficult! lol At least you have a positive confirmation with the blood test. :)

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There are a variety of gluten withdrawal symptoms. You may get some, all, or none of them. Moodiness, hunger, brain fog, the headaches of course, and others.

Also, a lot of us feel fantastic at first, then have a bit of a relapse. I know I did. After two weeks I felt better than I had in my life. Then I started feeling tired all the time and ran into other problems. I developed intolerances to lots of other things - corn, salicylates, and I was also reacting to pesticide residue on my food. I had to keep it simple for several months. Whole foods only, and strictly organic. It was about a year before I was able to start adding foods back to my diet. Although my energy level still hasn't gotten back to what it was, I am eating a more varied diet now, and other than being tired all the time, I have no symptoms.

And the tired is probably vitamin deficiencies. Haven't found a good vitamin I can take that doesn't have gluten or soy or corn. :angry:

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Hi Zibby,

If you want to go ahead with the the gluten-free diet without testing that's fine. But be sure you can stick with it without a diagnosis. The blood antibody tests are a simple process now, but they are difficult later. All they do is draw a little blood and send it to lab for testing. If you wait until after you are gluten-free, you will have to do a gluten challenge for a while to build up the antibodies again, which can be very unpleasant if you have celiac or NCGI. Reactions are sometimes stronger after being off gluten and restarting it, so it is better to get tested first if you intend to ever get tested.

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I agree with Gee Eff. Just because your doc screwed up and didn't do the biopsy testing, and your PA tells you to go gluten free, is not a reason not to do the blood testing right now!! before the antibodies leave your system. Because once gone, coaxing those little suckers back for testing can be pretty painful :huh:

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GFinDC and Mushroom, thanks for that info. :) The PA gave me the choice of doing the blood test and I chose not to do it. She didn't push it and was fine with just diet modification. If I continue to feel really good on the gluten-free diet, I don't need a blood test to confirm it. I'll just keep doing it. If I was having a much more sever reaction (such as a rash) I'd probably do it. That and laboratory tests cost more money out of pocket with my deductible starting over this new year so it's also not something I want to pay for. It does suck that the biopsy was not taken, despite finding benign polyps. :( My stomach sure feels a lot better though and I hope it continues that way! I can't say 100% I won't slip up but if I do, it was an accident because I'm diabetic and pretty good about reading labels and Googling foods I'm unsure of. Thanks for your responses! :)

Oh and I don't know if this counts but I did have a basic allergy blood test done that included wheat and other common foods, animals, plants. .etc and they were all negative.

Edited by Zibby
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Ahhh, the withdrawl headache... that was a doozey for me. I remember is lasting the better part of a week and it hurt to turn my eyes or change direction. Ouch. On the bright side, that was the last major migraine I've had in 6 months, and I used to get a migraine at least a couple of days each week. :)

I was also extremely grumpy. EXTREMELY. I knew it but I just couldn't shake it. It lasted about 2 weeks. I was more tired too so that probably didn't help.

I also remember being hungrier than before. When I was eating gluten I had to eat every couple of hours or I got the shakes; that has no stopped but I had a really bad case of the munchies that first month or so. It could have been partially psychological as I proved to myself that there was still lots that I could eat.

My stomach pains mostly went away immediately but I still had the occasional issue for a month or two. Now I just get a stomach ache if I eat junk food.

That's all the withdrawl symptoms that I remember...

Congrats on figuring out that gluten is the cause of your problems. I would like to echo what the others said though; if you think you might need a diagnosis in the future, for insurance or testing of vitamin deficiencies or related autoimmune disorders that often pop up, you really should do it now because going back onto gluten for a month or two is often very painful and can cause long term health problems. Celiacs should all have their nutrient levels checked because we are often very low in some key nutrients like D, B12, Ca, K, Ferritin, Fe... would a diagnosis help you to get coverage for that, as well as pay for any extra supplements (some need B shots and special iron supplements) or test needed for deficiencies (like a bone density test if your calcium is low and osteoporosis is setting in which happens often and early in celiacs). Also, many celiacs develop other autoimmune disorders (as you know since you're diabetic), the most common AI disorder being Hashimoto's thyroiditis (hypothyroidism... over 1/10 have it), that you should be checked for. To be properly tested for Hashi's you should get your TSH, Free T4, Free T3, and TPO Ab checked.

I'm done my nag. LOL I wish you the best of luck with the diet, you are off to a great start! :)

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Ahhh, the withdrawl headache... that was a doozey for me. I remember is lasting the better part of a week and it hurt to turn my eyes or change direction. Ouch. On the bright side, that was the last major migraine I've had in 6 months, and I used to get a migraine at least a couple of days each week. :)

I was also extremely grumpy. EXTREMELY. I knew it but I just couldn't shake it. It lasted about 2 weeks. I was more tired too so that probably didn't help.

I also remember being hungrier than before. When I was eating gluten I had to eat every couple of hours or I got the shakes; that has no stopped but I had a really bad case of the munchies that first month or so. It could have been partially psychological as I proved to myself that there was still lots that I could eat.

My stomach pains mostly went away immediately but I still had the occasional issue for a month or two. Now I just get a stomach ache if I eat junk food.

That's all the withdrawl symptoms that I remember...

Congrats on figuring out that gluten is the cause of your problems. I would like to echo what the others said though; if you think you might need a diagnosis in the future, for insurance or testing of vitamin deficiencies or related autoimmune disorders that often pop up, you really should do it now because going back onto gluten for a month or two is often very painful and can cause long term health problems. Celiacs should all have their nutrient levels checked because we are often very low in some key nutrients like D, B12, Ca, K, Ferritin, Fe... would a diagnosis help you to get coverage for that, as well as pay for any extra supplements (some need B shots and special iron supplements) or test needed for deficiencies (like a bone density test if your calcium is low and osteoporosis is setting in which happens often and early in celiacs). Also, many celiacs develop other autoimmune disorders (as you know since you're diabetic), the most common AI disorder being Hashimoto's thyroiditis (hypothyroidism... over 1/10 have it), that you should be checked for. To be properly tested for Hashi's you should get your TSH, Free T4, Free T3, and TPO Ab checked.

I'm done my nag. LOL I wish you the best of luck with the diet, you are off to a great start! :)

Hi nvsmom, thank you for the great info as well! :) I did have nutrients tests done and only came up deficient in vitamin D (which apparently is very common). All other vitamin levels were good. I do have hypothyroidism (not Hashimotos though, that came out negative) as well as the diabetes (moreso borderline). Why I was not tested early on for Celiac is beyond me. I've had go through a lot of complaining and junk tests and irrelevant specialists before getting each diagnosis. I'm also lactose intolerant as well. Fun!

I guess I should consider myself lucky that the only side effect so far is the headache (thank God not a migraine!). So sorry you went through all that! :( I really hope my symptoms don't get worse.

Thank you so much all for the support and the advice!

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Sublingual tablets in vitamin are absorbed well by celiacs because it is absorbed from the mouth rather than the intestines. I too was only low in vitamin D and I figure that goes with being Canadian... The sun sets shortly after 4:00pm now a days. ;)

Did they determine what is the cause of your hypothyroidism? I ask because I barely tested positive for it; my TPO Ab was high but still in the normal range... I called myself Hashi's before my doctor would commit to a label. LOL :rolleyes:

Lactose intolerant too, eh? That is very common around here. I'm 6 months gluten-free and still can't tolerate milk.

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Sublingual tablets in vitamin are absorbed well by celiacs because it is absorbed from the mouth rather than the intestines. I too was only low in vitamin D and I figure that goes with being Canadian... The sun sets shortly after 4:00pm now a days. ;)

Did they determine what is the cause of your hypothyroidism? I ask because I barely tested positive for it; my TPO Ab was high but still in the normal range... I called myself Hashi's before my doctor would commit to a label. LOL :rolleyes:

Lactose intolerant too, eh? That is very common around here. I'm 6 months gluten-free and still can't tolerate milk.

Ooo thanks! Do you have any recommendations for the sublingual tablets? I looked on Amazon briefly but mainly saw B12 and D1000. I am eating gummy vitamins (gluten-free) cause I hate swallowing the large ones. Sublingual would be awesome but then again, do they come in multi or just individual supplements?

Do you know what your TSH was at the time of diagnosis? I've been tested by a couple of endocrinologists but they haven't been able to identify the type of hypo. Maybe being medicated and stable makes that harder to determine? I got diagnosed around 2002 I think. It took a long time to even get that diagnosis because I was extremely exhausted and it wasn't until I was slurring my words, could barely talk, think or lift my head that I got a positive blood test. The acceptable ranges are too high! The range was between 1-5 and so even though I was at like 4 or so, I was still within range. My comfort level is a 2! My levels started going up and down for a bit til about 2 years ago when a Dr put me on Tirosint, a gel capsule form of Levothyroxine for better absorption and it has been stable ever since. :) Hmm evidence of malabsorption?

As far as diagnoses.. I have a lot. lol Nothing debilitating thankfully! Has anybody's thyroid conditions improved with eating gluten-free? Diabetes? I'm thinking that since it's still possible to eat poorly and eat gluten-free, a total diet change would still be necessary for improved blood sugars. I control mine with diet and hope to keep it that way! I'm wondering though if that means I would need to get rechecked to make sure the change in diet doesn't alter my thyroid levels.

Lactose.. oh lactose. What a pain in the rear! I have been drinking Lactaid for years and occasionally torture myself with ice cream, in which my upper stomach blows up like a balloon. I tried drinking almond milk for a while but the taste just isn't right for cooking so I switched back.

I grew up in Washington state and it seemed rare to see the sun. lol Now it's just because I don't go outdoor much at all. Though it is currently cold winter for both of us. :)

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Ooo thanks! Do you have any recommendations for the sublingual tablets? I looked on Amazon briefly but mainly saw B12 and D1000. I am eating gummy vitamins (gluten-free) cause I hate swallowing the large ones. Sublingual would be awesome but then again, do they come in multi or just individual supplements?

Do you know what your TSH was at the time of diagnosis? I've been tested by a couple of endocrinologists but they haven't been able to identify the type of hypo. Maybe being medicated and stable makes that harder to determine? I got diagnosed around 2002 I think. It took a long time to even get that diagnosis because I was extremely exhausted and it wasn't until I was slurring my words, could barely talk, think or lift my head that I got a positive blood test. The acceptable ranges are too high! The range was between 1-5 and so even though I was at like 4 or so, I was still within range. My comfort level is a 2! My levels started going up and down for a bit til about 2 years ago when a Dr put me on Tirosint, a gel capsule form of Levothyroxine for better absorption and it has been stable ever since. :) Hmm evidence of malabsorption?

As far as diagnoses.. I have a lot. lol Nothing debilitating thankfully! Has anybody's thyroid conditions improved with eating gluten-free? Diabetes? I'm thinking that since it's still possible to eat poorly and eat gluten-free, a total diet change would still be necessary for improved blood sugars. I control mine with diet and hope to keep it that way! I'm wondering though if that means I would need to get rechecked to make sure the change in diet doesn't alter my thyroid levels.

Getting your thyroid levels rechecked every few months as you heal is a good idea!

And I recommend coconut milk for baking. It has a nice light flavour. Yum.

Lactose.. oh lactose. What a pain in the rear! I have been drinking Lactaid for years and occasionally torture myself with ice cream, in which my upper stomach blows up like a balloon. I tried drinking almond milk for a while but the taste just isn't right for cooking so I switched back.

I grew up in Washington state and it seemed rare to see the sun. lol Now it's just because I don't go outdoor much at all. Though it is currently cold winter for both of us. :)

We use SISU vit D 1000IU; it's D3. It comes in a small blue glass bottle. I take 2 to 4 a day and my kids take 1 or 2. They also come in 400IU but we were all borderline low with that. They are tiny like baby aspirins, and disolve in seconds. I also get Life brand one from Shoppers Drug Mart (Canada) that are bigger tablets but have a chocolate flavour. Yum.

When my Hashi's was diagnosed, my TSH was in the mid teens; I can't remember what exactly. I am almost sure that I've been hypo for 10-15 years though. In about 1996, I started having sudden, and painful joint problems that I thought could be arthritis. My doctor tested my TSH and it was 6 something (our range is 0.2-6.0) and then she restested it and it was about a 5. I don't remember her mentioning this though and only know about it because I stopped blindly trusting doctors and got my past records. She also found a positive ANA and negative RF but all she told me was that I did not have arthritis but I probably would one day and to come back if my joint problems didn't go away... Of course they did. :rolleyes:

I also had my TSH checked about 11 years ago when I was charting my basal body temps and trying to get pregnant with my first. I was worried because my temp rarely hit 97F (it still doesn't) but my TSH at that time was "normal" at just below a 3. I was still having fatigue and joint pain periodically though... And I think I was hypo while i nursed my boys, which may have worked in my favour because I've read that the antibodies in a mother's milk can make babies slightly hypo too.... and my boys were all amazing sleepers!

I don't trust the TSH at all. I would go by symptoms first, and then by free T4 and FT3, and possibly TT4 and TT3. I know my FT4 and TT3 are in the bottom 15% of the normal ranges (most feel best around 75%) and I feel pretty poorly and not properly medicated.... hate doctors.

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    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
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    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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