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Anyone Else Have This?

hercules25

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hercules25 Apprentice
hercules25
Posted

I have not got an actual diagnoses of Celiac but I did for Chrons based on a blood test and slight intestinal inflammation. I decided to go gluten free after a negative celiac panel and I feel worse when I was on the diet. I decided to still go gluten free cause my dr said their was an increase of Eosinophils which he said is an allergy and felt this was a food allergy causing my problems. (mind you this is after every intestinal test available) So I went gluten free for a week, bowels became normal but still had million other symptoms so I said forget this. Ate gluten and actually felt a little better for a day than mouth broke out with cold sores, tired, and so on. So I decided gluten free again. So when my husband came home from overseas I said screw it and started eating normal and I felt better so I thought. Within 3 days I had a bleeding UTI. Stopped making bowel movements, abdominal pain, and the million of symptoms I have. I seem to feel like total crap when I go gluten free but it starts to relieve some symptoms. I am waiting on another celiac disease results and am going gluten free again. I guess my major symptoms that bother me the most are severe vision problems, headaches, extreme fatigue, abdominal pains which does not seem to change (minus some abdominal pain) when I go gluten free so thats why I give up. My Chrons meds really did not do much for me either. I have had literally every test from every DR you can imagine and it all points towards my intestines. Why do I feel like crap when I go gluten free? And yes I am dairy free as well.....

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

You need to give the diet more time than a week to work. Some people don't feel better for a few months. Also what are you eating? Be sure to eat mostly whole foods/natural gluten free items instead of a bunch of gluten free replacement foods.

txplowgirl Enthusiast
txplowgirl
Posted

It's called withdrawal symptoms. You'll start to feel better then crappy then better and so on untill the gluten starts to get out of your system. For some the symptoms only last a week or two for some two to three months before they feel better. Then on top of it you'll probably find you have an intolerance to dairy and soy. It is usually advised to go dairy free as well for a few months and then you can possibly start reintroducing it back in.

Put withdrawal symptoms in the search box and it will bring up several threads on it. Try to be as strict as you can and try to be patient. You'll start feeling a lot better. Hang in there.

hercules25 Apprentice
hercules25
Posted
  • Author

I eat white rice, baked potatoes, gluten free chex cereal, Italian (gluten free) dressing, gluten free brownies, banana's, gluten free rice cakes, canned bean (black) silk milk, eggs, A1 sauce, albocore tuns with mayo (my own mayo jar) raw veggies. Turkey sausage, hamburger meat, Please help me with food ideas.

GFinDC Veteran
GFinDC
Posted

You might want to consider an elimination diet after you have been on the gluten-free diet for a few months. Quite a few of us have additional food intolerances beyond gluten. Soy is a big one, dairy, nuts, eggs, fish any of the top 8 food allergens are possible problems.

try a search on breakfast ideas, or Snack ideas, or menu ideas. There are several threads on each that you can read. The board has a whole section on recipes too with lots to choose.

T.H. Community Regular
T.H.
Posted

I'd second the possible other food issues. The gluten withdrawal seems to really knock some people down, and then some people get hit with food allergies whose symptoms were masked by the issues with the gluten.

Here's a question I'd ask: when you start eating gluten again, is there anything you DON'T eat that you DO eat on your gluten free diet? If there is something you are only eating when you are gluten-free, that might be something to keep out of your diet. However, if you are eating pretty much the same foods, then I'd think it's telling that you feel better when you are on gluten - sounds like gluten withdrawal might be an issue.

And for food ideas? Hmmm...

Rice pasta with Muir Glen or Amy's tomato sauce, both seem to be gluten-free.

quinoa - red or white - can be used for things you'd use rice for. The white has a milder taste, IMO.

Gluten free soy sauce (which is different than wheat-free) might be useful. We make stir fried bok choy with chopped garlic, chopped bokchoy, and a little gluten-free soy sauce/water, and serve it over rice. Quick, easy, and simple.

Quinoa flakes - these will cook into a porridge, or you can use them kind of like oats in recipes, although they will cook up a bit softer.

raw fruits and veggies, definitely. Paired with nut butters is nice, or use the fruits to make a glaze for meat.

All kinds of hummus to use as veggie dip. Spinach hummus, beet hummus, roasted garlic hummus, etc... Just make it from scratch - lots of good recipes on-line

potatoes and sweet potatoes, sliced into wedges, rubbed with a little oil, sprinkled with salt, and baked in an oven - about 400 F. They make good baked fries. If you want crispier, fry them for a minute or two in a hot pan and a TB or 2 of oil just before you bake them.

Crock pot cooking is nice, now. A big hunk of meat, some spices and veggies, and just pop it in the crockpot with a little water for something nice. :-)

Kebabs can be nice now, too. zuchini or yellow squash, pineapple, meat, etc... with a little dry spice rubbed on and grilled? tastes yummy.

I eat white rice, baked potatoes, gluten free chex cereal, Italian (gluten free) dressing, gluten free brownies, banana's, gluten free rice cakes, canned bean (black) silk milk, eggs, A1 sauce, albocore tuns with mayo (my own mayo jar) raw veggies. Turkey sausage, hamburger meat, Please help me with food ideas.

ravenwoodglass Mentor
ravenwoodglass
Posted

I eat white rice, baked potatoes, gluten free chex cereal, Italian (gluten free) dressing, gluten free brownies, banana's, gluten free rice cakes, canned bean (black) silk milk, eggs, A1 sauce, albocore tuns with mayo (my own mayo jar) raw veggies. Turkey sausage, hamburger meat, Please help me with food ideas.

I would drop the A1 sauce. I had a hard time finding the ingredient list but did find one that says this:

A1 is a steak sauce and condiment for use with meat or game dishes. Among its core ingredients are malt vinegar, dates, mango chutney, apples and orange marmalade

If this is correct A1 is a not something we should be consuming because of the malt vinegar.

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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