Miriam3

Thanks guys! Yeah, mom is sweet. I checked after you recommended it and the local organic market has Pamela's. The box even has a recipe for using it as a sweet bread, and I think that's what will taste best with mom's recipe. I'll let you know how it works out!

Help! My mom is being a total angel about gluten-free this Thanksgiving. It took her some time to come around, but she has been super-supportive about the family Thanksgiving and wants to make a gluten-free version of her famous holiday nut bread for me. She called me asking for gluten-free flour substitutes and I'm trying to find a good solution for her. Not sure what to tell her though!

It's a yeast-rising bread that she rolls up almost like a giant cinnamon-roll loaf after she spreads it with the nut filling. She doesn't have all the gluten-free flours/xanthan gum/etc. so I think the easiest thing would be to point her to a gluten-free bread mix that she can mix and use. She does her breads by hand without a bread maker.

Anybody have a suggestion that's reasonably easy to find at Whole Foods or somewhere and tastes good? I'm trying to avoid Bob's Red Mill. That garbanzo taste would seriously ruin mom's bread.

I had horrible menstrual cramps when I was a teenager. Birth control pills helped a little, but depo provera or the Mirena IUD worked the best. Both stopped my period and cramps completely. And Mirena is local hormones so it's not even bad for your bones. If your cramps are debilitating and you don't plan on having kids right away, I highly recommend it. It's really effective, low risk and easy to have removed and get pregnant right away when you want.

Evening primrose oil is another supplement that is supposed to help too!

What timing! I had oats three days ago and am finally over the feeling. I will never touch them again!

A friend mixed a packet of Quaker Peaches and Cream instant oatmeal into my box of instant grits packets. I am never usually tempted to eat gluten on purpose, but peaches and cream was my favorite as a kid and I hadn't tried oats since going gluten free. Have to try it once , I thought...

OMG, I never imagined it would hurt so much. Just like a glutening-- I got pains in the low stomach and cramps that went on for a whole night and day. The day after that my lower back was killing me.

Sorry to break it to you, but I'm 99% sure that was a gluten-ing. I guess you can keep arguing whether I was sensitive to the pure oats or whether there were wheat contaminants in Quaker's product. As bad as it was it didn't kill me and I believe in giving things a shot before I cut them out of my diet. I'm retired from oat-eating by my own choice.

If you're addicted to oats by all means don't let me discourage you without a trial, but I would at least make sure to try the kind claiming to be contaminant-free first!

Agree with the other two posters. I became more sensitive the longer I was gluten free. Picking off croutons off a salad is not a good idea if you are planning on being truly gluten free. Did you check the ingredients of the dressing?

I agree it could be the dressing! I went to a "pasta feed" the night before a run just to keep friends company and there was almost nothing there I could eat. The croutons, caesar dressing, lettuce and parmesan cheese were totally separate so I thought I was home free. I had lettuce, dressing and parmesan and I have never had such awful stomach pains in my life! It HAD to be the dressing since I didn't even eat anything else that night.

I guess I learned don't get distracted by the obvious-- I was so focused on keeping the croutons away from me I didn't even think to ask about the dressing. Probably loaded with flour for some reason. Careful of suspicious creamy dressings all!

Same here. I only got an 10 for gluten antibodies, but I know that I'm not just being a hypochondriac about the gluten. I've been slowly but surely avoiding bread and other "junk foods" for years because they just didn't seem to make me feel good. I didn't know about celiac, so I thought I was just having "food coma" from too much starches. Rarely I would have a sandwich but mostly I was only getting the hidden gluten in certain foods I was still eating.

Now that I've been gluten free a piece of bread would half kill me-- I've felt it.

I'm considering having my IgA checked because of it, and I understand your frustration, Jitters. I would rather have it clear in black and white than be wondering. And with my family I could be the world's most famous celiac doctor to the family reunion and have him swear on the bible that I had celiac and my family would still think I was just trying a fad diet. They only believe in medical conditions they have heard of before and cures that come in pills.

Stay gluten free for your family and keep looking for answers as long as you feel you still need them! We're here for support.

Welcome ScatterBrains!

Wow, we have had very close to the same symptoms all along the way. Except for the eczema, I had everything you've mentioned. I was even on ADHD meds for a while. Milk was a big culprit. When I was a kid my allergist told my parents to take me off milk, but they thought that was silly. It's taken another 25 years to figure it out again myself. As soon as I eliminated gluten I started to feel better, but it made the casein issue crystal clear. Milk free has made all the difference.

Best wishes for a great recovery. My skin is incredible after all the years with acne and I'm about to ditch my expensive treatment products! Keep us posted on your progress.

Miriam

I couldn't say it much better than what everyone is pointing out here-- between the guilt over having maybe passed on a gene, worry that they might come down with the same "inconvenient" condition, and belief that all special diets are optional "fad" diets, we are all fighting uphill trying get real understanding from our families and friends.

I will say that my friends have been much more understanding and helpful than my family. I don't think this is because my family are jerks, though. I honestly think that since this condition runs in the family it's given everyone low expectations about what it feels like to be healthy

Things like chronic D, inability to keep on weight, stomach ulcers, are so common among relatives on my mom's side, I think everyone in the family thinks this is just what you deal with as you get older. I feel bad for them, but I just have to choose health and let them think I'm flakey. I try with the mainstream articles clippings though. Maybe someone will make the connection if it comes from a source they trust as opposed to their supposedly flakey relative.

What about rice pasta and marina-type sauce? That's what I serve people when I don't want to call attention too much to the gluten-free thing. No gluten-eater I have tested Tinkyada rice pasta on has ever disliked it. They all say it tastes just like the normal stuff! You could offer to cook and bring it along so he doesn't have to go searching for it. He can take care of sauce and maybe a nice salad. If he cooks fish, you can go that way too.

If you don't have problems with milk, parmesan cheese or some nice cheese on the salad won't be a problem either. Hope your date is wonderful!

Thanks all for the input! Hmmm...maybe my immune system is finally on vacation after all the fighting it's been doing. Reminds me of those descriptions I hear about "high histamine" and "low histamine" traits. I'm not sure what's the scientific basis for it, and I never totally accepted it as real. But I have heard that high histamine people have lots of allergies but low colds. Their immune systems are always on the warpath.

Nathan'sMom, do you think your son switched to the low histamine type or something similar? At least it sounds like I'll have the energy my body was using to fights colds to use for me....once I get over all this junk

Ali, what kind of probiotics do you swear by? I was taking some Acidophilus but I couldn't tell if it was helping and I was getting gas, so I cut it out in case that was why. Where can I get something more trustworthy?

I've been gluten-free for almost three months and CF for about one. I'm feeling better in lots of ways, but all of a sudden my immune system seems like it's taking a vacation on me.

I've been fighting this stupid cold for almost two weeks; I found a wart on my finger (first time in 20 years) and just found I have a yeast infection (first time in four years). Warts and colds are viruses, yeast is fungus...anyone had this happen AFTER being on the diet?

My celiac symptoms have always been mostly neuro, partly gastro. In times when I was doing especially badly and went undiagnosed I felt weak and tired, but I wasn't really prone to colds or infections. ONCE I had about six yeast infections in a row, but that was years ago. Usually I seem to get colds less and fight them off faster than other people.

....So why does it seem like my immune system has abandoned me now that I'm trying to take better care of it with the Gluten-free Casein-free diet?

I'm so glad that you mentioned this! My body temperature has ran low for years, and the doctors never though anything of it. I hadn't seen this symptom listed anywhere.

Kate

Well, docs will tell you there is a normal range, and 97 isn't out of it so it's nothing to worry about. It didn't worry me that the thermometer said a certain number, it worried me that I couldn't get warm and that sucks! I've seen cold hands and feet on a few sites as a possible symptom, but I guess it isn't a classic one. For me, I'm just happy to finally be warm!

If you see it get better, let us know. It would be interesting if it worked for more that one person to eliminate the gluten and kick the cold!

I've dealt with hypoglycemia for years-- and isn't it even more tricky when you have to come up with a balanced meal that doesn't include wheat? (My dietician originally had me eating wheat crackers and peanut butter for my hypoglycemia )

It helps to find some slow releasing carbs-- the kind with some fiber to slow down the carb burn. Apples are a lifesaver for me (easy to pack for people who work Mbelle!) I also make a ton of brown rice at the beginning of the week and have it with meat for lunch. Stay away from coffee and tea, the caffeine can cause a hypoglycemic crash when you're delicate. I'm off dairy for now too, so for me nuts are the best way to get some fat.

Thanks Drollchick, I'll give that a try. I've been choosing my own list of supplements for a while-- I think it's time to jump on board with something that's already formulated.

What do you mean freezing in waves? (sorry, I've never heard that expression before=p)

That's great that you feel better though... I've been on the gluten free diet for about 5 weeks now. Dairy free as well for 3. I don't feel better yet... my brain fog is horrible and I feel like my brain is floating.

I'm curious to how everyone eats though. I'm wondering if eating healthier, perhaps more veggies and seafood, or even fruits can make you feel even better than just gluten-free or perhaps help you heal faster?

"Freezing in waves"... ....I guess that's not a real expression and it sounds confusing. What I mean is gluten or casein make me feel suddenly cold, sometimes so cold my teeth would chatter. Even in a really warm place (and I mean I live on a tropical island and this still happened)-- I'd get ice cold hands and sometimes feet. The chilled feeling comes in waves is what I meant, and I never connected it to the gluten/casein until I stopped eating them and realized my hands were toasty warm all the time. Also my body temperature went up to 98.6. It was down around 97 ever since I can remember-- and the medical records show it.

I ate super healthy for YEARS before I found out about gluten. It's probably why I survived. I was such a health nut--fruits and vegetables, salads at restaurants, all good fats, no junk food. I avoided extra bread, but of course I would eat whole wheat sandwiches and crackers. Only the healthiest wheat for me! --And of course that's why it sucked to be miserable so much.

I'm just glad we're all on the mend. Hope everyone notices a new improvement today!

What do you all do about supplements while you're recovering at the start of your gluten-free diet?

I've been taking a B-complex supplement (B-1, B-2, Niacin, B-6, Folic Acid, B-12, Biotin and Pantothenic Acid) for almost a year now. I've only been Gluten-free Casein-free for 2 months. I was taking it before I got diagnosed because I was feeling tired, stressed and losing exercise endurance. It was a suggestion from a coach I know.

I've felt a little better since starting it, but nothing dramatic. Then I found out about the celiac and the level of malabsorption. And no wonder I needed an extra kick of vitamins since my gut wasn't helping me. But should I really keep taking these? My doctor hates these questions because he doesn't like to test or treat people unless they seem sick enough to him. I guess I don't qualify anymore since I seem to be on the mend. I got him to test me for B-12 and Folic Acid, and he says my levels are fine.

Problem is, I tried to stop taking them and it makes me feel like crap. If I forget to take them in the morning, I know by afternoon because my mood drops, I start feeling melancholy or anxious and I just don't have much energy. A couple of hours after taking them, I seem to recover some. This is not in my head, it happens when I totally don't expect or believe in any magical effect of B-vitamins!!

Doc is pretty much done with vitamin tests-- should I find some nutritionist or alternative medicine doc and try to get more tests? Or is there a particular amount of time anyone would recommend taking them while my stomach heals? Any suggestions or experience appreciated!!!

For me (double DQ3, subtypes 7,9) the symptoms have been mostly non-gastro (ice cold hands/feet, eyelid and other muscle twitches, migraines, brain fog, fatigue, bad memory). Does anyone else have the cold hands and feet? I can't tell you how many tests of my thyroid I had to go through because of that! And it was always perfect, no antibodies even. This is when the doctor stopped being interested and I got sent away with no help. Days after I went gluten free I realized I could sit in an air-conditioned room and not be miserable for the first time. BTW, the acne on my back and chest I had for over 10 years went away once I went Gluten-free Casein-free.

I wasn't totally without gastro symptoms-- I always had a baseline level of bloated stomach, gas and constipation, I just got to ignoring it after a while. The thing is, in times of stress or very high gluten intake, the gastro symptoms got scary (vomiting, wracking stomach pains, can't eat ANYTHING without pain).

Nice to compare notes with y'all. Anyone have any feedback on memory function after starting the diet. In some ways my short-term memory seems a little better. But there are still times I find myself way behind other people in what I remember. Can this get better?

I'm at over two months gluten-free now. I started to feel better after four days-- meaning, the gas, cramps and bloated stomach started to get better. Over the last couple of months a lot of the water weight I was carrying around in my stomach and legs started to go down. My ankles look less puffy. Also I stopped experiencing really bad brain fog in the middle of the day and stopped being freezing in waves throughout the day.

I wonder though... what really is 100% well? Since I was a pretty little kid I was always considered healthy enough but had a lot of nagging stuff, like leg pains at night, extremely sore after exercise, hard to concentrate, brittle fingernails, frizzy hair, and later acne all over my body. ...All the kind of stuff that doctors can tell you are "normal for some people" and send you away.

Well, I'm glad to say a lot of that stuff isn't "normal" anymore!! I am slowly getting to be the most healthy in my life and it's pretty great. I just feel like I won't know when I'm done because I've never felt that good BEFORE.

Thanks all Your experiences will definitely help me try to put this in a sensitive way. I would just love for one family member to be curious like your mom, Rho!!! My aunt is my best hope for that. I'll talk to her this weekend and at least get her the message it might be a good idea to get her son tested. Let y'all know how it goes!

Hi all,

I've got a dilemma most of you seem to have had at some point... I've done really well on a Gluten-free Casein-free diet and although I don't want to be some preachy convert, I want to tell some of the family members I suspect have similar issues about what might help them.

Any hints on how to talk to people without intimidating them or turning them off?

I had a talk with my mother...not so successful. She is very spacey a lot of the time and it seemed she couldn't focus on how I talked about it. She kept changing the subject. She is also very against complaining to the doctor about anything unless you are critically ill. She does not want to consider the hassle of going on a special diet. Later she offered me a wheat thin.

I haven't gotten to talk to my sister yet-- she is often sick with the big D, fatigue, depression and migraines.

Also my heart is really going out to my little cousin. He reminds me so much of how I looked and felt when I was his age (12)-- a little heavy, irritable, sleepy eyes. Looks sickly and tired a lot of the time and is uncoordinated at sports. Has vicious food cravings. His mom is very doting on him and very into healthy food, so she may listen. She also may be hostile if she senses someone is trying to say her son is defective. She feels he is brilliant and is proud of his accomplishments in school.

Okay, long post. But I sure could use the help!!! Anything-- is it better to talk about it indirectly in terms of me, or suggest testing for them because this runs in families? How much to point out about symptoms I've observed or heard from them... etc... I realize you can't change people or con them into some diet they don't want. I just want to present it in a way that might open up their minds!

Miriam

Hi Fitgirlie,

Hope you are making some progress in your diagnosis/plan for recovery. Just wanted to add that I also have the DQ7 gene, which it looks like new research is turning up as a celiac gene too. Enterolab gave me my results this way:

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)

A helpful responder to another thread sent me this:

Here something about DQ7 being a celiac gene too:

Open Original Shared Link

I can't be of great help to you in the "official results" area because I have been avoiding starches for years. I thought they made me "sluggish". Also dairy because I thought I was lactose intolerant. That's as close as I ever came to recognizing the reason behind all my lousy symptoms. So no positive biopsy or bloodwork. But I'm certain I'm celiac-- the Enterolab results showed a pretty seriously elevated fecal fat. My intestines were damaged for sure by the amount of gluten and casein I was eating (as if I couldn't tell by the fact my face has been gaunt and hollow like a malnutrition patient for five years!!). Gross, but I didn't even know poo was not supposed to float until I learned about celiac three months ago! And the first time in my life it DIDN'T float was two weeks after I stopped eating gluten.

But I thought it was interesting you and other people with DQ7 mentioned the migraines with aura and the itching. Was yours itching on your lower legs mostly, with no visible "hives"? I got diagnosed with hives with that kind of itching too. The antihistamines didn't help though. I suffered with it for two years when I lived in England, and then it finally went away (I used to eat the old-style giant shredded wheat biscuits while I was there, ack! No one ever suggested that was why I was so miserable!) I get brain fog, muscle twitches in my arms, sides and eyelids, and tingling fingers after bad gluten attacks. I have been tired and had trouble reading my way through even one whole book for years.

All this has gotten soooo much better since I stopped gluten and casein. And the acne and blackheads I've had for twenty years is almost totally gone (from my face AND body). If that's not results, I don't know what is.

Sorry for the long post. Hope you're doing better. Please write with anything you want to compare or ask. It's good to feel you have a "genetic relative" to compare symptoms and solutions sometimes!

Miriam

Hi Jen,

I did a search and found your thread after my enterolab results just came back. If you're still around the boards, I'm another DQ3 (Subtype 7,9). Here's what I got after a little over a month of gluten free (wish I had done things in a different order now!) But gluten-free has done me wonders of good and I'd be happy to exchange symptom stories with you:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 10 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 7 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 893 Units (Normal Range <300 Units)

Fecal anti-casein (cow

Hi Ravenwoodglass,

In case you're feeling alone in gene land, here are my new results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 10 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 7 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 893 Units (Normal Range <300 Units)

Fecal anti-casein (cow

Thank you both! Anne, I'm a Seattle girl by origin too! You know how hard it is to be there with all the great restaurants and try to be all picky. I went back a few weeks ago to visit family-- at least chefs there are nice and usually happy to help people who need to "tweak" menu. But thanks for keeping me looking on the bright side (yay, wine!). I'm working on healing my gut and then I'm going to try with the goat cheese and sheep cheese like you say. After you said that I looked up how the casein is a totally different type, so it's worth a try. It will sure make my salads better again!

Just had this happen too! I've been gluten free for a little over a month now. I felt a lot better, but I finally realized the only times I DIDN'T feel better were after having dairy products. I don't think it's just lactose intolerance because I get bad "brain fog" and chills with ice cold hands-- besides the gas and cramps. Now I'm Gluten-free Casein-free.

Please someone tell me maybe it will stop now!!! (The new "surprises", that is...)

I know some people here are avoiding tons of foods, but I was a total "foodie" before this and I don't want to have to keep cutting foods out forever. I'm scared to eat soy right now because I don't think I can stand to find out I can't have that either. And cutting out eggs and yeast would push me right over the edge.

Any good words? Is Gluten-free Casein-free usually enough?