wschmucks

YES-- There is a HUGE connection.

1 out of 100 people have Celiac, but 1 out of 10 people with Lyme also have Celiac. The way that the Lyme bacteria goes through your body confuses your immune system-- creating auto-immune disease, like Celiac. Lyme disease is not an easy thing to test for, some people go years without being able to get a positive blood test, when they are in fact infected. Also one of the first symptoms of Lyme is constipation, which leads a lot of people to the GI Dr.

After 2 years on a gluten-free diet, and SCD diet-- I tried everything and was still more fatigued and brain foggy than ever, I was finally diagnosed with Lyme disease, even though it wasn't popular in my state (which doesnt mean a thing) and I had NEVER even seen a tick, let alone been bit by one. I strongly recommend getting tested if you are not improving. If you do have Lyme the longer you wait the harder it is to ever recover.

Whitney

Hi there,

First of all if you are still symptomatic of hypo then its VERY possible your medication is not adequate regardless of what your Dr says. A lot of people need their numbers to be above the range to be symptom free-- and in my book if you have symptoms then the issue was not resolved, which is dangerous for your health. Another thing is the levo is a T4 only medication. Many feel much better on a T3 and T4 medication like Armour, or add cytomel which is a T3 in with their levo and get great results. Not all Drs like to go the extra mile, if yours is one of them-- get a new one, you hired him after all! I would find a Dr who beleives in this type of treatment-- its worth the effort TRUST ME!! Going gluten free might help, but if youre hypothryoid I STRONGLY suggest you make sure its being treated very well. Google "stop the thyroid madness" it details what I am saying.

Good Luck!

Hey Guys, I dont eat any grains and usually use almond butter or coconut flour for my baking. I was wondering if anyone has used the Trader Joe;s Almond Flour? It says its make on the same equipment....but I'm not very sensitive at all..so I'm thinking of trying it out. Anyone have any experience with it?

Thanks!

YES. Half my hand or feet would go numb for hours-- totally numb it was sooooo weird-- then I was diagnosed and I've never had it since. I didnt think it was related until I read about it and made the connection. We forget how everything is connected :-)

I'm not a Dr-- but I say no. Thats the difference between Celiac and intolerance/ allergy; Celiac causes intestinal damage but intolerance does not. If youve been gluten free and you really feel you've improved dramatically then keep doing it! Dont look to a test to tell you what your body is already telling you. Once youve reached a level ground health wise if you want to know for sure...order that pizza and have a piece, but beware some people take several glutenings before they actually react. I'm not reactive unless I really skrew up, but the internal damage to my intestines and immune system is still happening. If youre feeling better, just stay on the road youre on.

Hi there! First off let me tell you not to second guess yourself. Dont let people make you think youre crazy. Your feelings and concerns are perfectly valid and if you dont listen to your body you WILL pay for it later. OK so the blood test is very unreliable. You can have Celiac and have a negative blood test. So what you need to do is have a biopsy (make sure you are eating gluten for about 6-4 wks every day before so you dont miss the diagnosis). To complicate things even more, some people dont have a positive biopsy but still have Celiac. I think its worth it to have the biopsy though. If you feel better not eating gluten then dont! But Id go through the testing first.

I have a probelm with the term IBS. I dont think it exists--i just think its a label Drs put on people when there is a GI problem and they dont know what it is, or how to fix it. So keep on trying to find the answer and if your Dr isnt helpful then go to another one. I went to about 4 Drs before I got diagnosed. One Dr doesnt know it all.

Well it takes several months for those anti-bodies to go down. So you could take it now, knowing it will be elevated or wait another 2-3 months...just dont get glutened again. I've had those clusters and didnt react-- it was probably a bad batch (too bad cause they're pretty good!)

well I would think the problems with that would be that there is no actual biopsy if there is only a camera used. The biopsy is examined under a microscope to check for villi damage, its my understanding that this damage is very hard to see with the naked eye (which is why an endoscopy isnt used alone, the biopsy needs to be taken during endoscopy). It just doesnt seem to be a very good diagnostic tool when examining the actual surface of the small intestines. I wouldnt rely on it.

Yes, Jelly Bellys are gluten free! I have not checked within the last few months but I have not heard of any ingredient changes :-) so dig in!

Yes I agree with the last post--TSH is good, BUT you need your Free T3, T4 and Thyroid Anti-bodies (for hashimotos) tested. If your Dr wont test for them get another Dr, because it is impossible to be properly diagnosed without those tests. It would be like testing for a wheat allergy instead of for Celiac, close-- but no cigar.

It sure sounds like you have Celiac. Get to a good GI pronto and demand a Celiac panel blood test. The pins and needles is a big tip off, I had the same thing too-- my finger or foot would get totally numb for a few hrs (soo wierd!). Take it really seriously though, you need to get tested. Also an idea for breakfast-- do you think maybe you could do a protein shake? or some sweet flavored yogurt? Chocolate covered almonds? Try to get snack throughout the day if you cant eat. I had the same problem.

Thanks for the response. I should clarify...I was using gluten intolerance & celiace disease the same way. I know the are not the same though.

Yes-- very much NOT the same thing. To be honest since your anti-bodies are literally 0, I would say that a biopsy would be pretty useless. If anti-bodies were boarder line or something Id say do it. The biopsy test isnt the most fun to prep for or do. So if you feel better being gluten free, keep doing it and see if it keeps helping. Also for insurance purposes it really is better to be 'intolerant" than Celiac, meaning: no celiac means you dont have a pre-existing condition that keeps us from getting independent insurance coverage. Celiac patients often times are plagued by other health problems too, so its good it get out of those too! So really its a good thing! But keep gluten-free if you think youre intolerant, with time you'll know for sure if staying gluten-free is necessary for your health. Good Luck!

When I did the test i was light on gluten for about 6 months-- but really loaded up before the test for 6 weeks-- BUT that was for the biopsy. Are you having a biopsy? I'm not sure how that works because hes so young. I'm sure youre aware that the blood test can be iffy as a sole source of diagnosis. Heres what I say: Gluten load him for 3 reasons, 1. if hes getting sick when he eats gluten and it makes him miserable then he will get it, and really want to be gluten free 2. You dont want to have a doubt in your mind, do everything you can to make sure its done right 3. this may be the last time for the rest of his life he can eat gluten, eat his favorite foods cause he'll never have them again. Good Luck!

Well there are a few things that you can do. First if youre taking psyllium I would drink a lot more water-- especially cause you work out every day (im a runner too :-)). I really would double your water intake. Also how much magnesium are you taking and what type? For me I have to take Citrate and about 1,600 mg for it to work at all. Another thing you should look into with your Dr is to have your thyroid checked (make sure they test TSH, T4 AND Free T3-- its important they do all 3 tests!). You want your Free T3 to be in the high range-- which often isnt checked and can really lead to constipation problems. Also if youre eating veggies I would make sure they're all cooked, alot of people with C have trouble with raw veggies, so switch to steamed spinach salads :-) Good luck

well the alcohol might have gluten... and it doesnt say if its distilled. Do we still say gluten free?

ok...so im not sure if creme de menthe is ok-- there is not information in the bottle regarding its origins or ingredients. Anyone have any ideas?

I actually just found a clinic started by one of Dr Oz's colleagues, who personally battled chronic fatigue syndrome to the point of being homeless. Its the Fibromyalgia and Fatigue Clinic (u can google it)-- there are about 10 nationwide. Im going to check it out cause ive been battling this for the past few years and have been bed ridden for 4 months. Might be worth looking into.

There is a whole thread on this site for the SCD. I have been gluten-free for over a year and can still not tollerate raw food-- so that would not be the one for me. Many of us do not have the enzymes necessary to break down the raw food, regardless of supplements or enzyme rich diet. It is actually a chineese medicine norm not to feed a sick digestive system raw food or anything cold. With that said, im glad youre finding improvment with the raw diet. Out of curiosity does UC attack the large intestine or small? If its the large that maybe why you can tollerate raw food.

I was on the SCD for about 7 months. I liked it-- it is labor intensive and a lot of hard work. I didnt really see very much improvement except that because my diet was so limited i would know exactly what had glutened me. I used to feel sick every time i ate anything and the SCD did help with that-- so that was good. It also let me know that i was doing everything i could to get better. SO i would visit the link and have her try it out for a few months. It has really helped alot of people.

Diddo on the Thyroid. Go back and insist (tell him you know he doesnt think it would be necessary, but you really need to do it, just to east your mind). My TSH has always been very normal, but if you test my Free T3-- its low, so I am hypo. If you dont test the Free T3 my results look perfectly normal...like every Dr told me for years. I would google: "stop the thyroid madness", its a good source for making sure you get an accurate diagnosis. American Drs have been screwing this up for years.

Yolo is right about the parasites and olive leaf. It seems with Chronic fatigue there are multiple problems, usually: hormones, immune system, viruses/ parasites and nutrition. I would do a few rounds of Parashield (herbal supplement to help kill parasites), add the immune boosters and check out your thyroid and sex hormones to make sure everything is where its suppose to be. Dont push yourself too much when youre tired, but try to get in some walking and such. Good luck, i hope you feel better soon.

there was a recipe some where here-- I havent been able to find them commercially either :-(

You have tp be 100% gluten free for several months to notice a difference and it takes about a year or more to heal the gut, so going gluten free for a little bit and cheating when at a friends house really doesn't qualify as being gluten free long enough to give your body a chance to really improve and heal. It isnt uncommon to have symptoms several months after being gluten free. Weight gain also plauges a large population of Celiacs (me included), so that isnt a sign that you dont have it.

I wouldnt freak out-- Just go to a good GI and have them do some tests: lower sonogram will check for ovarian cysts or any internal abnormalities that may cause obstructions. I was terribly constipated for years with nothing helping and it turned out my thyroid was within "normal" limits-- but it wasnt optimal. Once it was treated the constipation has almost resolved.

I agree on the SCD she should def try it. Some people with UC or Chrons cannot tollerate gluten simply because it is harder on youre intestines. if your daughter was dx wiht chrons/ UC with a small bowel follow through I cant imagine it being misdiagnosed (meaning celiac would never look like chrons on a small bowel follow through). It is very rare to have both chrons and celiac, but it does happen. You should try out the SCD and see how it goes. It is a very hard diet but it worth it for her health. Good luck!

i agree on the rice cakes. It would be best to stay away from anything that comes out of a box for awhile. To be honest-- it might be nothing youre eating. Youve only been gluten free for 2 months-- usually it takes between 6-12 months to have a real difference. So be VERY careful with what you eat or it will just take longer.

i don't expect them to make me food specially, i just won't eat the gluten stuff--the only thing i would expect is them to leave me alone about it! so i filled up on the veggies that i could have (and ate something else later). but my dad & stepmom still insisted that i eat the chicken. i didn't, but i just want to make sure i'm not crazy....