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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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