I'm Terrified Of This Dx... :(

[a84c72]

For almost a year now, I've had SEVERE fatigue. There are days when I will sleep 10-12 hours, get up for a few hours, and go back to bed for another 3 (even with a CPAP). I also developed what really appeared as IBS and there were times when it was crazy painful after I ate, but was ok after using the bathroom. My upper abdomen started feeling sore to pressure and I complained "my liver hurts". All tests came back normal.

I was sent to a gastro for the IBS who decided to do a colonoscopy (and go down through the top, as well). That resulted in a stomach polyp that was benign and I thought everything else was fine until I got a phone call today. The biopsy from the other area the doc took samples from: celiac disease. I have no idea if a biopsy can indicate THAT, but that is what they said. She told me the villa in my intestine were "blunt" which was a flag to the doc.

UGH. So now I have to do a bunch of blood work.

This, on top of a recently diagnosed PCOS/insulin resistance along with borderline high cholesterol. While going through the PCOS diagnosis, I was found to be deficient in iron and vitamin D.

I am 40, a stay at home mother, and scared to pieces. I was afraid before because I sleep SO much and feel it isn't fair to my kids, but now...holy cow. I just wasn't ready for a celiac disease dx on top of an insulin resistance issue.

I have no idea what to do. I was overwhelmed as it was (and still am) with the insulin issue, but now I have to add into the equation gluten issues??

I read the "safe" and "unsafe" ingredient lists, but let's be honest: I don't even know what the majority of these ingredients are let alone trying to REMEMBER them when shopping.

There is a store that has gluten-free items (and expensive at that...we are on one income), but it's not a large section and I honestly feel as though between the PCOS and the gluten factor, I am screwed, for the most part. I mean, I can't eat a plain baked potato with the insulin issues!

We also do take-out because of schedules and looking at many of these menus......there is like hardly anything to pick from. Subway has NO BREAD that is friendly, although, some of their meats are. Well..what the hell good is meat without the bread?? LOL! I mean...SERIOUSLY!

So, I am wondering.......how does one deal with the insulin AND the gluten aspect? I read about the type 1 diabetes issues that is on here, but nothing about insulin resistance and/or type 2.

Appreciate any insight!

[Lisa]

  On 8/23/2012 at 11:14 PM, a84c72 said:

For almost a year now, I've had SEVERE fatigue. There are days when I will sleep 10-12 hours, get up for a few hours, and go back to bed for another 3 (even with a CPAP). I also developed what really appeared as IBS and there were times when it was crazy painful after I ate, but was ok after using the bathroom. My upper abdomen started feeling sore to pressure and I complained "my liver hurts". All tests came back normal.

I was sent to a gastro for the IBS who decided to do a colonoscopy (and go down through the top, as well). That resulted in a stomach polyp that was benign and I thought everything else was fine until I got a phone call today. The biopsy from the other area the doc took samples from: celiac disease. I have no idea if a biopsy can indicate THAT, but that is what they said. She told me the villa in my intestine were "blunt" which was a flag to the doc.

UGH. So now I have to do a bunch of blood work.

This, on top of a recently diagnosed PCOS/insulin resistance along with borderline high cholesterol. While going through the PCOS diagnosis, I was found to be deficient in iron and vitamin D.

I am 40, a stay at home mother, and scared to pieces. I was afraid before because I sleep SO much and feel it isn't fair to my kids, but now...holy cow. I just wasn't ready for a celiac disease dx on top of an insulin resistance issue.

I have no idea what to do. I was overwhelmed as it was (and still am) with the insulin issue, but now I have to add into the equation gluten issues??

I read the "safe" and "unsafe" ingredient lists, but let's be honest: I don't even know what the majority of these ingredients are let alone trying to REMEMBER them when shopping.

There is a store that has gluten-free items (and expensive at that...we are on one income), but it's not a large section and I honestly feel as though between the PCOS and the gluten factor, I am screwed, for the most part. I mean, I can't eat a plain baked potato with the insulin issues!

We also do take-out because of schedules and looking at many of these menus......there is like hardly anything to pick from. Subway has NO BREAD that is friendly, although, some of their meats are. Well..what the hell good is meat without the bread?? LOL! I mean...SERIOUSLY!

So, I am wondering.......how does one deal with the insulin AND the gluten aspect? I read about the type 1 diabetes issues that is on here, but nothing about insulin resistance and/or type 2.

Appreciate any insight!

Hello and Welcome! I'm sorry it took so long for someone to answer your post. I will try, but I don't know anything about insulin resistant issues, so you might need to edit my post to meet your needs.

The blood work should not be a big issue. Make sure they do a FULL Celiac (Blood) Panel as you CONTINUE to eat gluten. They should also test your blood for mineral and vitamin deficiencies. Often times we are deficient in B-12 and Folic Acid, which would attribute to your fatigue.

After that's done, you are free to go gluten free. It can be a difficult transition. But to make it easy, start with fresh foods, meats, fish, rice, potatoes (? for you), fresh veggies and fresh fruits. Make it a rather natural diet and eat simply.

You can advance when you get a grasp on things. But, the most important thing to do now is to take a DEEP breath and know once you climb this hill...it's all down hill from then. Fatigue and pain will be gone and you will have lots of energy to spend time with your children. ...no pills, no surgery, just a better quality of life with just a few "tweeks".

Spend time with us and take baby steps. A diagnosis is the beginning toward feeling better.

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Although your Biopsy confirms Celiac Disease, your blood work and positive dietary response can also confirm a diagnosis.

Welcome to the Club!

[MitziG]

You are a lucky lady, even tho it doesn't seem like it now. Your doctor actually thought to check for celiac (rare occurence) amd he found it! The biopsy is indisputable, even if the bloodwork doesn't show celiac as well.

You are lucky because you are likely going to see your other symptoms decrease or completely disappear on a gluten free diet!

Insulin resistance, PCOS and fatigue can all be brought on by gluten. My fatigue was so debilatating, like yours, that I barely functioned. I was like a woman dying of cancer...but I looked healthy and so docs kept giving me antidepressants! I struggled with steadily worsening fatigue for 20 years until my children were practically raising themselves. I slept 16-20 hrs a day but never felt remotely rested. I would have slept 24 if not for the need to eat and pee! I also developed interstitial cystitis.

When I was finally dx with celiac, my life started to change. It wasn't immediate. Very gradually I felt a bit less drugged. By 7-8 months I no longer slept all day. A year and a half later I wake up on my own at 6 am every day and feel ALERT in a way I had not felt my whole life!

I know it sounds crazy, but I am so happy for you! You won't have to keep living this way- you won't believe how much better you CAN feel!

[MitziG]

Oh, also...in regards to what to eat NOW...check out Marks Daily Apple.com and his book The Primal Blueprint. Once you start eating primally, your insulin issues will likely cease to even exist!

[butterfl8]

As miserable as you have felt, you will feel that much better, and more. I was also extremely fatigued, but it came on so gradually I didn't even consider it a problem. I also got hit with the 'high cholesterol' business. I was thankful for the dx, because this was something that could be managed without drugs, without surgery, etc. All you have to do is be careful about what you eat! And once you are eating right, you will feel better. That thought is what keeps me going--feeling better. Although now I feel great, so what keeps me on the diet is the thought of never feeling that horrid again.

As for the ingredients? It's absolutely easiest to start with whole foods--the outside of the store. You get all the fruits and vegetables that you want (except those high glycemic starchy ones), any meats and fish, rice, dairy (but be careful to begin with-you may start with a touch of lactose intolerance, but that can go away after a few months). Carol Fenster has some amazing cookbooks to help you out with new 'no flour' food. Can you tell us what country you are in so we can give you more information about labeling laws there? If you are in the U.S. or Canada, Shelley Case's "A Gluten-Free Diet" will go a long way towards taking away that terror when you are first beginning. I HIGHLY recommend Fenster and Case, who actually work together often. They are great resources for everyone.

Best of luck, and look forward to feeling better!!

[1desperateladysaved]

I am sorry that you have suffered with this. I am happy that you found out, because now you can do something about it.

I remember when I was giving a spelling test and would fall asleep between words. I expect you have some memories like that. I made it past 40 before I found out. I have been about 4 months grain free and classic gluten free 6 months. I feel for you. It is real, there is something wrong, and now it will be work.

I wish we could bring you a meal. Try to plan one meal at a time. Try to stay home for a while and figure things out. The forum is a good place to find people who will understand. You can find ideas of what to eat too.

I have started eating poached eggs on the soft side with every breakfast. For insulin problems you are better off making sure to have protein with fat for every meal. I just mention this one as eggs are easy to make and quick. Just hope we tolerate eggs.

I hope you will keep us updated and will recover.

Diana

[rosetapper23]

I know that you seem overwhelmed at the moment, but part of the problem is that you're anemic. Of course, you feel overwhelmed! Once your nutritional deficiencies have been resolved, you'll be able to think more clearly and have more energy to organize and plan your meals (for both your family and you).

The advice above to eat primally is excellent. Mark Sisson's book is a good place to start, but the book "Primal Body, Primal Mind" goes into exactly what insulin resistance is about and how to overcome it. After you read this book, you should feel much relieved...because there IS hope to regain your health.

Regarding your meals, you really just need to concentrate on eating whole, natural foods. If your family needs takeout, okay, buy them takeout. However, YOU will need to follow a more healthful, natural diet to start feeling better. Also, celiac is a genetic disease, so it's very possible that one or more of your children also have celiac. You should definitely have all of your children tested (bloodwork) every few years, since celiac needs to be triggered....and can occur at any time during a person's life. Hopefully, once you're feeling more focused and energetic, you'll prepare meals that can be reheated whenever your family members are able to eat their meals--then you won't have to worry about takeout.

So...take a deep breath, take the necessary supplements to get better, and dive into your new gluten-free life. Eating BETTER isn't necessarily difficult--it just means changing your mindset about what real food actually is. Eating gluten free is not all that difficult, and sharing the gluten-free lifestyle with your family is a gift they should appreciate.

Please ask as many questions as you'd like--we're all here to help you!

[upwitht21]

Was diagnosed with pcos about 2 years ago due to infertility. I never felt it was right and kept looking, was blood test diagnosed last November (also have a family history so opted to skip the biopsy) went gluten free and got pregnant in January with zero fertility assistance (miscarried) and am pregnant again 4 months later. Gluten messes with everything....you will be amazed the difference. Happy healing and keep your chin up, you are not alone.

Hugs!

Jess

[Takala]

No, but you will eventually, if you exercise ENOUGH, be able to eat a stuffed baked potato with either yogurt or cheese or olive oil and vegetables and a meat on the side. Or a small serving of home made home fries on the weekends.

With insulin resistance/PCOS, you forget about eating the disaster of a food pyramid of high carb low fat, and eat vegetables, good fats, proteins, and fruits, and much less grain carbohydrate, sometimes, depending on what gluten free diet you get along best with, as a grainless version, such as SCD or Paleo.

Funny how people think they don't have enough time or money to make themselves well because they think they have to eat fast food. The time you spent sleeping is now going to be partially spent on food prep and packing lunches.

You shop around the edges of the grocery aisles anyway, with gluten free, and you stick with unprocessed foods. I suggest getting a crock pot if you don't have one already. I also, based on my own experiences, suggest you try google searching for recipes using almond flour or almond meal, which is high protein and low carb, there are blogs dedicated to this, and if you can handle nuts, you can make a LOT of different recipes with this. You can also, depending on your local suppliers and how sensitive you are, buy almonds in bulk or mail order, and grind them yourself very quickly in a blender, or mail order almond flour online.

If you don't live near good shopping, use mail order, if you have a question about something, go to the baking section and ask. I don't have buckwheat flour at the local store, but they DO have gluten free buckwheat cereal that I can then grind in a dedicated coffee grinder. A little buckwheat flour goes a long way in a recipe. I use amaranth flour for its protein and mold retardant properties, a baked good made with some of it as part of the flour blend won't go moldy after a week in the refrigerator.

Really good pancakes/flatbreads can be made out of 1/3 each buckwheat, potato starch, and garbanzo bean flour. (if you need to, you can sub the bean flour, but it does work best, and this is technically a grainless recipe, as buckwheat is a seed).

For your family, you may want to make brown rice your staple grain, and cook more with beans and potatoes for their starch needs, as it is easier to do the family dinners gluten free. If you end up thinking you have a corn problem, try eating fresh sweet corn and seeing if you react, if not, then your corn meal or flour was cross contaminated.

For lasagnes, cabbage leaves can be substituted for the noodles, for low carb, and I've served this to other people and they can't believe it's got cabbage in it. Rice noodles can be used for regular gluten free pasta dishes.

Be aware that a small percentage of us also react to gluten free certified oats anyway. The very sensitive react to things made in factories that grind oats. So hold off on the oats for a little bit until you get the other part squared away, so you can test it.

Other typical reactions can be to soy flour. There is such a thing as gluten free soy sauce, Tamari, by San J. Fermented soy sauce does not bother some of us.

Bet you're looking at your ketchup. Good news is, regular Kraft brand Heinz will say gluten free on the label.

Vinegar. Pure 100% Apple Cider Vinegar is safe.

If you think you can't bake, you can experiment with microwave baking at first, using baking soda and cider vinegar for leavening, especially with bun-in-a-cup type recipes which use one egg, and make 1 to 2 servings of bread or cake in a bowl in 1 to 2 minutes. Chebe mix, which is tapioca flour, is another very easy way to make fast little breads gluten free. Chebes can be made into little oblong sandwich "rolls" which bake up quickly in oven or microwave. Other gluten free flours, say a 1/2 cup, and an extra egg and oil can be added to the Chebe mix, for variety. The egg and cheese/yogurt in them makes them rather dense and not as big a bad carb impact as regular breads. Chebe mix pizza crust is almost foolproof for home made gluten free pizza, and still less expensive than store bought. Pamela's is a good all purpose baking mix.

You can do this. It's not so bad once you get your shopping re adjusted.

[justlisa]

I've been concentrating on recipes using coconut flour and almond flour... My hubby is type 1 diabetic... You should check them out. (Keep in mind that some recipes aren't going to be very good...don't get discouraged! Through trial and error I've come up with some really good ones)

[GFinDC]

Hi,

It's great that you have an explanation of why you have been tired and feeling off for so long. Going gluten-free should help a lot with your symptoms. It may take a while for your body to adjust to gluten-free eating, but if you stick with it the improvement will come. Healing is not a first day thing though, it can take months to get you gut back in shape. For the type 2 you want to keep with a low carb diet, and eat some protein with every meal. A grain free diet is totally doable, and is not a bad way to go. You can eat most whole foods like meats, veggies, and nuts. Low carb eating is good for anyone though, not just people with blood sugar issues. Your whole family should really do it as it will help their health in the future. Some celiacs do a totally grain free diet to avoid cross-contamination issues with grains.

The glycemic index is one way to think about how foods can affect your blood sugar.

Open Original Shared Link

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

Open Original Shared Link

[kittty]

  On 8/24/2012 at 5:08 AM, Takala said:

For lasagnes, cabbage leaves can be substituted for the noodles, for low carb, and I've served this to other people and they can't believe it's got cabbage in it.

Oh yum! I'm going to try that this weekend!

[nvsmom]

HUGS. It can be a shocker. I'm a 38 yo SAHM too, and I also wondered if approaching middle age was supposed to feel that sluggish. I got enough done because I had to but I definitely don't have the cleanest house on the street, and would rather curl up with a book than walk my kids to a park. It was almost a relief to find out that I was celiac and that what I was feeling wasn't the way it was supposed to be. "Normal" must feel like such a caffeine buzz!

You will probably have to eat out less. Fast food isn't very celiac friendly. I always have a stash of a couple of Lara Bars (2-5 recognizable ingredients per bar) with me when ever I leave the house so I don't end up hungry somewhere. Find some good gluten-free cookbooks from the library. There is lots you can still eat. Rice noodles instead of wheat noodles, gravy with cornstarch instead of flour, corn or rice tortillas instead of wheat, more potatoes and rice and yams and quinoa... Really, it is just a few ingredients that are off limits, and after just 2 months, I'm getting very good at picking foods I can eat. My entire family has been almost completely gluten-free this week and they never noticed...because I didn't point it out to them. Hang in there.

You might want to get TSH and T4 tested for hypothyroism from Hashimotos disease; it's a common autoimmune disorder where your body attacks your thyroid (like a celiac's attacks her intestines) which really slows your metabolism and causes fatigue and celiac-like symptoms. After being gluten-free for a couple of months, my energy hadn't improved but I found out my thyroid isn't working so it keeps me sluggish. While running around doing errands the other day, I stopped to check my blood pressure in the drug store. I was harried, the kids were irritating me, yet my bp was (low) 102/68 and my pulse was 60... no wonder I was sleepy. You might want to mention hypothyroidism to your doctor too.

Best wishes.

[beachbirdie]

  On 8/23/2012 at 11:14 PM, a84c72 said:

For almost a year now, I've had SEVERE fatigue. There are days when I will sleep 10-12 hours, get up for a few hours, and go back to bed for another 3 (even with a CPAP). I also developed what really appeared as IBS and there were times when it was crazy painful after I ate, but was ok after using the bathroom. My upper abdomen started feeling sore to pressure and I complained "my liver hurts". All tests came back normal.

This, on top of a recently diagnosed PCOS/insulin resistance along with borderline high cholesterol. While going through the PCOS diagnosis, I was found to be deficient in iron and vitamin D.

I am 40, a stay at home mother, and scared to pieces. I was afraid before because I sleep SO much and feel it isn't fair to my kids, but now...holy cow. I just wasn't ready for a celiac disease dx on top of an insulin resistance issue.

I have no idea what to do. I was overwhelmed as it was (and still am) with the insulin issue, but now I have to add into the equation gluten issues??

I am sorry you are feeling so overwhelmed, but I can see quite a few of the great forum members have already passed on some worthy advice.

I do have an exception, and that is rice. My brother is diabetic (Type 2) and has found that rice really spikes his blood sugar badly. I concur with those who suggested just eating whole foods (meats, vegetables, a little starch) or going whole-hog (pardon the pun) into something like paleo- or primal-eating, and the Specific Carbohydrate Diet or GAPS diet might be helpful too. Google them, easy to find!

Don't think you need to replace all your gluenous stuff with expensive gluten-free stuff. There's plenty to eat without it! This doesn't have to be expensive.

Just know that you will be amazed by how much better you feel when you get your diet going. There is a learning curve for it, but it won't take long before it's second nature!

[beachbirdie]

Okay, I realize you are already overwhelmed and this is all so new you might not have the energy to go searching for all these places...so here are a few more links for you...

Open Original Shared Link

Open Original Shared Link (this was created for people with Crohn's Disease...you can jump into the full diet without going through all the beginner steps if you are not having the diarrhea and cramps and all the intestinal discomfort...just use the food lists and guidelines for advanced folks!)

Open Original Shared Link Same advice here...just jump in, don't worry about starting where the beginners start...just start using the food lists...

Read some fun stuff...

Open Original Shared Link

Open Original Shared Link

[BitterGrad]

Hang in there. It is an overwhelming diagnosis but it gets easier! Once you start feeling better life is awesome. Your energy levels will be through the roof. There are so many gluten free breads now too. Costco even carries a brand now!

[jlaw]

  On 8/24/2012 at 4:05 AM, upwitht21 said:

Was diagnosed with pcos about 2 years ago due to infertility. I never felt it was right and kept looking, was blood test diagnosed last November (also have a family history so opted to skip the biopsy) went gluten free and got pregnant in January with zero fertility assistance (miscarried) and am pregnant again 4 months later. Gluten messes with everything....you will be amazed the difference. Happy healing and keep your chin up, you are not alone.

Hugs!

Jess

Congrats, Jess! All the best

[a84c72]

Thank you for all of the information!!! WOWOWOW!

I read that before I actually do the blood testing, I shouldn't start the gluten-free? Still, the villa are pretty blunt, from what I'm told so I am betting the blood work will confirm it. UGH. Figures.

I am still very much afraid of trying to get the hang of this and trying to make sure I don't "screw" everything up. HUGE lifestyle change, for sure.

As for the hypothyroidism, I've had that all tested when the endocrinologist did numerous blood panels during the insulin/PCOS/etc testing. No thyroid issues.

My PCP tested for rheumatoid issues because my body just tends to ache for "no reason". SED rate was 25..... everything else was normal, pretty much (low saturation, low iron, the given stuff I already knew).