Multiple Questions

[Deacon's Garden]

I have so many questions I don't know where to start.

I am a 42yo female in good health and at a healthy weight. I have 7 children, so I keep quite busy and I cook from scratch.

Six weeks ago I began to have abdominal pain after eating, followed by back pain. I was also cycling between C and D. I saw my PCP and she ordered gallbladder and pancreas levels and ultrasound. I have elevated amylase and lipase. US showed nothing. By this point I was unable to eat hardly anything because of the pain, and now nausea and fatigue. She told me to switch to a liquid diet and she ordered a CT w/contrast of my abdomen. This showed nothing. By now I have developed a cycle of two good days followed by two bad days. I don't eat on the bad days and then I start to feel better, start eating and then crash again (this means I am in bed feeling like I have mono and the flu at the same time). I was doing a lot of online research and found out about celiac. The PCP sends me to the gastroenterologist. They nod and smile when I list my symptoms and ask if anyone has celiac in the family. No, no one does. They order celiac panel, metabolic, CBC, TSH and EGD. She recommends I try the gluten-free diet. Turns out the celiac panel is not covered by insurance and my husband is out of work, so we decide to skip it and try the diet while waiting for the EGD. Two days into the diet I feel like a new woman: more energy than I've ever had, no brain fog, very minor pain (still healing?), no depression or irritability, almost hyper. After 4 days I have not crashed yet, so I am SOLD on the gluten free diet. Then my husband buys me a loaf of gluten free bread (Udi's) and I have brain fog and dizziness. I'm stumped. What set me off? Was it the yeast? Without meaning to I've also cut out yeast, sugar and a lot of dairy, because I'm not eating wheat. Then the next day something knocks me out again, this time with irritability and fatigue. I had scrambled egg with cheese for breakfast, so I decide to test dairy by eating some cheese (since I already feel awful) and I get a lot of gas and some abdominal pain. Does that mean I need to stay off dairy? How do I know if it is the lactose or casein? Then I have scrambled egg the next morning without the cheese and again have the irritability and fatigue. SO, that means no egg, right? Does that also mean no egg when it is mixed into a recipe?

Next, my doc told me to go on the gluten-free diet even though I have the EGD coming up in 10 days. Will it still be accurate? Does it matter since I've improved so dramatically off gluten? Will I continue to have more and more sensitivities? Is this all in my head?

Like I said, I have 7 children, 6 are at home and 5 of them are under the age of 10. I CAN NOT have a gluten free home. How do I do this!?

Final question: During the 6 weeks that I've barely been eating (<500 cal/day) I've only lost 5 lbs. That is a red flag to me. My TSH was 2.43. My doc says that it is fine. My hair has been falling out for years, I have Reynauds, I've had a miscarriage this year and 19 of the 22 symptoms for hypothyroid that were listed on a medical website. HOWEVER, 10 days into the diet now my hair stopped falling out as of yesterday and I've lost another 5 lbs in just 2 days. Could the celiac (if that is what it is) have been causing a thyroid problem that has now been alleviated in just 10 days of being gluten free???? I haven't been able to lose any weight since my last daughter was born 2 years ago and now I've lost 5 lbs in 2 days?

I am so thankful that I found this site. I've read almost all the posts during my 'crash' time. You are all so helpful and knowledgeable. Thank you!

[IrishHeart]

I'll cut to the chase and answer the big ones:

1) Symptoms are not in "anyone's head".

2) Symptoms resolving on a gluten-free diet is indicative that gluten is a problem for you. It's out and you feel better, right?

3) Many celiacs also have secondary lactose intolerance because lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

4) Your doctor is SO WRONG!!!!!! YOU NEED TO BE consuming gluten for a biopsy to be accurate. Just doing an endoscopy does not diagnose celiac.

5) Your symtpoms, including having other autoimmune diseases, sure are indicative of a gluten intolerance, if not celiac.

6)Why you reacted to the gluten-free bread or any other food does not necessarily mean that other foods are a problem, rather you either got cross-contaminated from gluten in the home or you are still in the healing phase. This takes a while.

7)If you say you cannot have a gluten free home, you will have to learn the nuances of keeping a strict gluten-free diet with gluten eaters in the house. It can be done!

First things first...make sure you are having a biopsy for celiac diagnosis and make sure you are good and glutened-up for it ---or it may be a false negative.

It does not matter if "no one else in the family has it"--it could just be no one has been DIAGNOSED with it YET.

No one in my family had it before I was DXed either. Someone is always first.

Best wishes!

[lynnelise]

I can address a few of your issues. The Udi's bread and the egg: you would still be healing so that could explain the reaction. I would try eating whole, natural, fresh foods for a few weeks. It's very likely you don't have any other food intolerances. Early on in the diet you can have good days and bad.

As for the EGD: eat gluten until the day of the test. Start the diet after! I would start the diet even if the test is negative!

Diary: A lot of people are lactose intolerant until their intestines heal. Lay off dairy for a couple of months and try adding it back after you've had time to heal any inflammation!

As for the the thyroid symptoms: there are a lot of overlapping symptoms between thyroid and celiac so yes the gluten free diet may have improved those for you. Also you need to ask for a test of thyroid antibodies. Sometimes your TSH is normal but you still have an autoimmune thyroid problem like Hashimoto's!

If you can go 100% gluten free at home it would be a huge help to you. I know it's hard with lots of kids but realize all of them are susceptible to gluten issues themselves so it's very likely at least one may end up diagnosed as well!

[Deacon's Garden]

Thank you for getting back to me. The EGD is supposed to be for biopsy purposes. I am interested in asking if they'll do the test I saw posted on this forum where they put the gliadin (sp?) on the biopsy to see if it reacts because I WILL NOT EAT GLUTEN. I am completely out of commission for 2 days if I do - have you ever seen a house with 6 kids when mom is out of commission for 2 days?

On the other hand, if I just have something the night before would that be enough? Probably not, huh?

I just had some gluten free potato chips for a snack and my stomach is all cramped up and I am nauseous. Is that also because I still need to heal?

Big question: Could this have been damaging my villi even before the pain started 6 weeks ago? I guess I just figured it started a short time ago and I am not going to have any damage on the biopsy anyway.

If anyone can answer the thyroid questions, I'd really appreciate it.

I apologize that my posts are so long. I'm so desperate for information and answers.

[jswog]

Then my husband buys me a loaf of gluten free bread (Udi's) and I have brain fog and dizziness. I'm stumped. What set me off? Was it the yeast? Without meaning to I've also cut out yeast, sugar and a lot of dairy, because I'm not eating wheat. Then the next day something knocks me out again, this time with irritability and fatigue. I had scrambled egg with cheese for breakfast, so I decide to test dairy by eating some cheese (since I already feel awful) and I get a lot of gas and some abdominal pain. Does that mean I need to stay off dairy? How do I know if it is the lactose or casein? Then I have scrambled egg the next morning without the cheese and again have the irritability and fatigue. SO, that means no egg, right? Does that also mean no egg when it is mixed into a recipe?

I have found the same reaction with eggs. I absolutely CANNOT eat straight eggs any longer (scrambled, fried, boiled, etc.) which was a HUGE disappointment for me as eggs have always been my go-to protein source. While I do LOVE Udi's bread, I do get a minor reaction from it. I still eat it from time to time anyway.

[IrishHeart]

I have found the same reaction with eggs. I absolutely CANNOT eat straight eggs any longer (scrambled, fried, boiled, etc.) which was a HUGE disappointment for me as eggs have always been my go-to protein source. While I do LOVE Udi's bread, I do get a minor reaction from it. I still eat it from time to time anyway.

Eggs bother me, too, hon....Not IN things. Alone. Not sure why.

My Mom said Udi's bothered her too. Not sure why.

She switched to Canyon Bakehouse Bread. No problem!

Hubby makes our bread --and that seems to agree with me.

[rosetapper23]

At first, you may be experiencing what's called cross-reactivity, which is your body's reaction to gluten-free foods as though they contain gluten. Your body's immune system may be on high alert because of its sensitivity to gluten, and it has identified other foods that are structurally similar as containing gluten when they don't. If this is the case, remove those foods from your diet for a few months and then add them in again one by one. Sometimes the sensitivity to other foods (such as dairy, eggs, and gluten-free grains) goes away, and sometimes one or more of the sensitivities remain. I had no cross-reactions to gluten-free foods until after I'd been on a strict gluten-free diet for seven years--they I got accidentally glutened by paprika (which, since it contains Vitamin A, which is inflammatory to celiacs, just ripped up the lining of my small intestine). My severe reaction caused my body to start reacting to ALL grains, even though they contained no gluten. I'm hoping that this sensitivity to grains will improve over time, and I've currently avoided gluten-free grains for about four months. Also, you should be made aware that many celiacs cannot tolerate soy and/or iodine. The chips you ate may have contained one or both.

Sometimes people are sensitive to the gums in gluten-free breads (and Udi's has been mentioned by many posters here as causing digestive complaints due to the high amounts of xanthan gum that is allegedly used). You might try Rudi's and Against the Grain Gourmet breads instead. Against the Grain Gourmet makes a great baguette that is very similar to sourdough baguettes. Their website lists where their products can be purchased.

If you want answers regarding your thyroid issues and lipase, etc., I can recommend a book where the author gets into the biochemistry of each of our organs. She specifically outlines what could be malfunctioning based on labwork and diet. The book is, "Primal Body, Primal Mind," by Nora Gedgaudas. It is the most informative book I've ever read on nutrition and its effects on the body, and you can currently buy it very cheaply through Amazon (I just bought a second copy for under $9). She also discusses cross-reactivity and gluten sensitivity very extensively. I've read dozens of books on nutrition and health, and there's nothing that even comes close to what this book has to offer.

As for living gluten free with six kids, I have to tell you that it's very possible to do so. You'll be doing your children a favor by removing ALL grains from their diets. Since you cook from scratch, I'm sure you have many recipes that don't include grains and can provide them with healthful meals and snacks. Ice cream, flourless chocolate desserts and cookies, and fruit can still be served as desserts, and your children can certainly eat gluten away from home. If you feel that this is an impossible task (because your spouse is not supportive or your children become extremely unhappy), you'll need to keep a cupboard and refrigerator shelf for your own gluten-free foods. That means that you'll need to keep your own mayo, butter, peanut butter, and condiments separate and well marked. You'll need to get your own dedicated toaster and pans, wooden spatulas, cutting board, and collander. You'll also need to purchase gluten-free shampoos and makeup and be extremely careful when kissing people who have either eaten gluten or who wear lipstick.

I hope you get the answers you're seeking...and I think you're headed in the right direction. Personally, I feel that you probably have celiac and perhaps even Hashimoto's.

[Korwyn]

You may have developed cross-sensitivity to other foods. This is (anecdotally) fairly common. Many of these other food intolerances can clear up after an extended (usually) period of removing the offending food(s) from your diet in conjunction with strict adherence to a gluten-free diet. Also approximately 50% of people with Celiac disease also have a casein sensitivity (protein in milk).

Also, it is possible to have a completely gluten free household with kids. Especially since you do your own cooking.

[jswog]

Eggs bother me, too, hon....Not IN things. Alone. Not sure why.

My Mom said Udi's bothered her too. Not sure why.

She switched to Canyon Bakehouse Bread. No problem!

Hubby makes our bread --and that seems to agree with me.

I'll have to look for Canyon Bakehose arond here to see if that's better for me. Do you have a recipe for the bread your hubby is making? Prob getting a breadmaker very soon.

Thank you, IrishHeart! I always look forward to your advice.

[Di2011]

I WILL NOT EAT GLUTEN

NEITHER WILL I.. EVER

I'm a single mum of one and that has been hard enough.

[Deacon's Garden]

Thank you again, everyone. The cross-sensitivity is what it sounds like, and I am going to pursue the test for Hashimoto's, although, as I said, it seems like my symptoms are disappearing now that I'm gluten-free?

I've been putting off buying new kitchen equipment and books until I get 'diagnosed' or at least rule this out, but I'm so afraid to eat gluten to see if that really is the problem, that I don't know if I'll ever know for sure. I'm afraid the EGD is going to be negative and then I'll be always wondering if I'm just imagining everything and going to all of this work for no good reason. Is there any chance that the EGD might be positive even though I will have been gluten-free for 2.5 weeks when it finally is done? I couldn't heal that much, could I?

As far as testing for the children, I am assuming that since insurance won't pay for me to have the panel, that it won't pay for the children, either. Are there any less expensive ways to find out (other than put them all on gluten-free diet)? Do people without celiac disease also develop sensitivities like I, and others, apparently have? I'm afraid I'll cause them all to develop celiac disease symptoms. That sounds kind of crazy, I guess.

I guess I am in a panic because I'm so afraid of having reactions (whether to gluten or eggs or dairy or ...). I just want an IV and not have to think about it anymore.

sigh.

[rosetapper23]

Yes, it's possible that your villi are so blunted, a few weeks on a gluten-free diet won't matter. Quite frankly, though, I have very little faith in endoscopies anyway. Articles have been written by experts stating that the experience of both the surgeon and the pathologist can affect the results, and the damaged section may be beyond the reach of the scope. To me, it's a pointless test. If it comes out positive, then you'll have your answer. If it comes out negative, you could still have undiagnosed celiac.

Your statement about going to all this trouble for nothing if it turns out that you don't have celiac...well, all of us here know the answer to that concern. One day, you'll want to test the waters with some gluten...and you will definitely get your answer then. After that, you'll never want to eat anything with gluten again, and it doesn't matter if your condition has a name or not--you simply can never eat gluten. As for your children, gluten is good for no one, so their health will be better without it. Sooner or later, one or more of your children may begin to react to gluten that they ingest outside your home. No, you didn't "make" them sensitive to gluten--they were always sensitive, and it only became evident when they discovered how good digestive health could feel. Most people spend their entire lives thinking that they have "normal" digestive health...or just "normal" health, when, in fact, they are really feeling quite ill. Once gluten is removed, they feel wonderful and are only reminded of their former poor ("normal") health once they're exposed to gluten again. You'll be doing your children a favor to place them on a gluten-free diet--at least, while they're in your home. You won't get a second chance since their childhoods don't last forever....and they'll thank you for it one day.

[AVR1962]

Stay on gluten until your tests are done but realize that testing is not accurate. It does sound to me that you have found your answer and that's what's most important. It is possible to be gluten-free in a household with gluten eaters, everyone has to become really of the rules you set.....like, once a knif touches bread it doiesn't go back in the jelly or the mayo. Keep the pasta strainer and the toaster for them but realize you can't use it. In our household which has both, the scrubbable pans are mine an the teen daughter has her own pan for fixing past. It's this sort of thing that makes it possible.

As far as your hair and your thyroid test. I too had hair falling out and a normal thyroid test. Docs did find a growth on my thyroid which I am being treated for. However, it was the gluten-free diet and supplementing that made my hair stop falling out. It would be my guess you could be suffering from some malabsortion. Zinc is good for hair, so is BioSil (I take it in drops) and Primrose oil (tabs).

My advise once the testing is done, no matter what the results, is to go to a strict gluten-free diet, read those labels, learn the words that you have to be aware of. But stay away from the gluten-free products for now. Reason being is you might find that your body has a reaction to more than just gluten, very common. The gluten-free bread, some of the flour & mixes, cookies, etc have xanthan gum and many have a reaction to it, myself included. Stick to a whole foods diet after testing, keep a journal and that way you can look back and figure out what else could be bothering your system.

Also, I would highly suggest cutting out the dairy at least for a couple months. Many times when the system is damaged by gluten it also cannot tolerate dairy. That for me was really hard. Good thing is there are dairy free items, however again be REALLY carefully as you could react to any of the ingredients in them like carrageenan and xanthan gum.

[IrishHeart]

I'll have to look for Canyon Bakehose arond here to see if that's better for me. Do you have a recipe for the bread your hubby is making? Prob getting a breadmaker very soon.

Thank you, IrishHeart! I always look forward to your advice.

Sure, kiddo!!--PM me and I'll send it to you. You do not need a bread maker!

[Deacon's Garden]

Thank you again, everyone. The cross-sensitivity is what it sounds like, and I am going to pursue the test for Hashimoto's, although, as I said, it seems like my symptoms are disappearing now that I'm gluten-free?

I've been putting off buying new kitchen equipment and books until I get 'diagnosed' or at least rule this out, but I'm so afraid to eat gluten to see if that really is the problem, that I don't know if I'll ever know for sure. I'm afraid the EGD is going to be negative and then I'll be always wondering if I'm just imagining everything and going to all of this work for no good reason. Is there any chance that the EGD might be positive even though I will have been gluten-free for 2.5 weeks when it finally is done? I couldn't heal that much, could I?

As far as testing for the children, I am assuming that since insurance won't pay for me to have the panel, that it won't pay for the children, either. Are there any less expensive ways to find out (other than put them all on gluten-free diet)? Do people without celiac disease also develop sensitivities like I, and others, apparently have? I'm afraid I'll cause them all to develop celiac disease symptoms. That sounds kind of crazy, I guess.

I guess I am in a panic because I'm so afraid of having reactions (whether to gluten or eggs or dairy or ...). I just want an IV and not have to think about it anymore.

sigh.

[IrishHeart]

Okay, you posted the exact same questions again, hon and I think they were answered, but I can see you are really stressing about this. Please, try to relax. Just because you still have reactions does not necessarily mean you have other food intolerances either. Or a thyroid problem or, or , or...

You may just be feeling crappy and going through withdrawal from gluten. Before you start panicking about every food, let's find out what going on first.

Have the test done. If you have celiac, it is likely there will still be damage. It's hard to say--everyone heals at different rates.

Let us know what happens and we'll help you as best we can.

Yes, in answer to your question--a gluten sensitivity CAN cause all the symptoms you describe without it being full-blown celiac disease.

The bottom line is this: The ONLY "cure" --for gluten intolerance or celiac---is still the same. A gluten free diet. That's it. No other "magic".

If you feel better off it---and you say you do--then, that is more of a diagnosis than any test. As for your children, let's see what your test reveals. If you are DXed, then maybe your insurance company will pay for testing--since it is a hereditary disease. NOT everyone develops celiac just because someone in the family does, either.

Let's cross one bridge at a time. It's too soon to start assuming too much.

Keep us posted.

[misslexi]

I just wanted to say you would be surprised how easy it is to cut out ALOT of gluten from your family's diet if you're the one cooking. Although it wasn't a gluten free home, I had my family eating gluten free about 90% of the time this summer while I was staying with them (and they were better for it, even if they might not admit it!)

I know you're worried about everything else, and I doubt I have much helpful to say on that part. But I just wanted you to know that it won't be as difficult as you think, even with lots of little kids I can share a few great recipes with you for baked treats that your kids will eat and not even know the difference if you'd like. And suggest a decent bread mix, that makes lovely bread (considering) WITHOUT a breadmaker. Purchasing gluten-free prepared foods is generally a huge waste of money. Alot of it tastes terrible, even stuff from bakeries is dry/goes bad immediately/cardboardy. At least in my experience.

[mushroom]

The only thing I can add is that worrying and panicking about something does not actually help anything or make anything better (although I know it is hard not to). So just try to relax and let things unfold a little bit. These things have been going on for some time and they are not going to get really bad or really good tomorrow In due course, all will probably be revealed (says she, who was blessed with patience). And who is spouse to someone who panics, when a little bit of thought would cause the realization that the world has not, in fact, ended.