Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

A Bunch Of New Stuff I Need Help With...


kaki-clam

Recommended Posts

kaki-clam Enthusiast

So, 2.5 yeas after diagnosis, still not feeling better, still presenting to my doctor with the same symptoms, have done the food journal, and had other tests run and no other food allergies, so we'll rule that out. My doctor suggested retesting my Celiac, and had me eat gluten for 2 weeks.... blood test showed positive, so we didn't bother with another endoscopy that my insurance wouldn't have covered. Blood work showed underactive thyroid and high blood sugar; not diabetes high, but 112 was my fasting blood sugar which doc seems to think we should watch. Diabetes does run in my family.

Now, here's the problems

1. I can't stop eating gluten, i keep telling myself i'll stop, but i swear it's like crack to me, it tastes sooo good! I keep saying next week, i'll start next week, i've even gone so far as to say i'll start right now, but i always fail the next day getting chinese take out or a cheeseburger with a delicious real bun! My house is gluten free, the meals i cook are gluten free, but i seek it out and i seek out people who will get it for me...like the girl i go to lunch with, she knows i'm not suppose to have it but she doesn't say anything. And the minute she does, i'll just go back to having lunch alone.

2. Eating gluten makes me feel a little better! Too much gluten and my stomach swells out and i feel terrible sick. (i suffer from severe constipation, so no diarreaha, but gluten vs non gluten free diet has done nothing to change this). But, if i eat a little, like a piece of pizza or a burger with a bun or some fried rice with soy sauce on it, my head clears up, i feel less tired over all (as in it doesn't give me a spike like sugar) and i seem to be missing less work. My doctors says if this is the case it's ok to eat a little....but i gotta wonder..what do you all make out of all of this?

3. Since eating gluten again, my sugar/sweet cravings have all but gone away

4. I am super irritable all the time. This is normal for me :) BUT, I am usually able to control it. Lately, since the gluten has returned...I am having problems with it.

They thyroid meds just started. I am on a low dose to see what works and i haven't been taking it long enough for it to work.

Any comments, thoughts, suggestions??


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Gluten may be your DRUG of choice! It sounds a little like a wheat addiction.to me...

As far as your lunch buddy not stopping or saying you shouldn't eat gluten! Well, I assume you are an adult so you need to be the one who controls what you say, do & eat not anyone else...they want to be your friend not your food police.

years & years ago before metformin & such came out the running number for a no treatement reading used to be anything under 200 , over 200 they treated.. But the drug companies had it lowered so they could sell drugs lots of drugs....You didn't say what your A1C was?

I run about 110 with an A1c of 6.1 which drives the doc crazy but that is normal for me...over the guidelines for todays world... Been this way for over twelve years never changes much...

Glad you are treating your thyroid.....

I would never cheat on the gluten-free diet. Health is by far the most important thing to one's well being. Body, mind & spirit. It takes all three to be healthy....if you are moody & easily ticked off if could be the gluten ...

mommida Enthusiast

You must be the percent that has an opiate like affect from gluten. :blink:

Now that you know it is a REAL problem, I hope you will find some help to get healthy. :)

burdee Enthusiast

Are you certain that you crave and 'can't stop eating' the gluten ingredient OR do you just miss gluten containing foods that you don't eat when you're following the gluten free diet? If you could find safe substitutes for tasty hamburgers or whatever other gluten containing foods you crave, would you try those? I suggest you list your favorite gluten containing foods and look for safe substitutes for all those (starting with hamburger buns).

There are sooo many gluten free products even in chain supermarkets now. There are many gluten free recipe books to help you make you own safe gluten free foods. You may believe you are 'addicted' to gluten. However, you may also be addicted to your favorite foods which incidentally contain gluten. Substituting safe ingredients for gluten will allow you to enjoy your favorite foods. Then you may conclude that you're just addicted to tasty food like most Americans.

I have gluten intolerance and 6 other food allergies. All of those foods cause gut pain and bloating, which I prefer to avoid. So I can't eat gluten, dairy, soy, eggs, cane sugar, vanilla and nutmeg. Those ingredients are contained in most fast foods and processed foods.

In order to abstain from all my allergens, I found safe and tasty substitutes for all my former favorite foods which contained my allergens. The most difficult was eggs, because I couldn't find a dairy/soy free mayonnaise for many years. However, I have great substitutes for all my former favorite foods containing all my allergies. I can't eat any processed (ready to eat) pastries, but I have several favorite gluten free breads, cereals and grains which don't contain my other allergens. However, last year I discovered 2 great baking recipe books which were free of 5 of my 7 allergens. That made baking much easier so that I can enjoy holiday pastries now.

Skylark Collaborator

1. I can't stop eating gluten, i keep telling myself i'll stop, but i swear it's like crack to me, it tastes sooo good! I keep saying next week, i'll start next week, i've even gone so far as to say i'll start right now, but i always fail the next day getting chinese take out or a cheeseburger with a delicious real bun! My house is gluten free, the meals i cook are gluten free, but i seek it out and i seek out people who will get it for me...like the girl i go to lunch with, she knows i'm not suppose to have it but she doesn't say anything. And the minute she does, i'll just go back to having lunch alone.

There are natural opiate peptides in gluten to which some people are very sensitive. That's why you find it so tremendously addictive. It's not crack. It's heroin! :lol: You HAVE to find the will to break the addiction or you won't get over the symptoms that are troubling you and there is a good chance your health will go downhill. You know you need to do this and you CAN. :) Will you start a thread on the board and post after each successful gluten-free day? We will cheer you on!

The gluten cravings WILL go away if you can get off gluten for long enough to break this addiction.

2. Eating gluten makes me feel a little better! Too much gluten and my stomach swells out and i feel terrible sick. (i suffer from severe constipation, so no diarreaha, but gluten vs non gluten free diet has done nothing to change this). But, if i eat a little, like a piece of pizza or a burger with a bun or some fried rice with soy sauce on it, my head clears up, i feel less tired over all (as in it doesn't give me a spike like sugar) and i seem to be missing less work. My doctors says if this is the case it's ok to eat a little....but i gotta wonder..what do you all make out of all of this?

Your doctors are wrong. It is NOT OK to eat a little gluten if you have positive celiac blood tests. You will continue to have villous damage and malabsorption, with all the nasty consequences like osteoporosis and nerve damage from B12 deficiency. You know how messed up some of us who had celiac for many years are. You don't want to go there, trust me and my self-destructing thyroid.

You are basically heading off a narcotic withdrawal by continuing to eat gluten. This is totally and completely understandable! Unfortunately you gotta find some willpower from somewhere and tough through the withdrawal. Once you go off of gluten entirely and get through the withdrawal symptoms things should settle down.

3. Since eating gluten again, my sugar/sweet cravings have all but gone away

As I'm sure you're aware, managing sugar/sweet cravings is a poor trade-off for the long-term health problems of untreated celiac disease. The easiest way to get rid of sugar/sweet cravings is to stop eating them entirely. I have to do that myself so I know how hard it is. Once you're off sugar/sweets for a week or two the cravings will subside. Alternatively, have something like ice cream or chocolate-covered nuts that has enough fat and protein to buffer the blood sugar bounce.

4. I am super irritable all the time. This is normal for me :) BUT, I am usually able to control it. Lately, since the gluten has returned...I am having problems with it.

I was super-irritable on gluten. :ph34r: My personality completely changed gluten-free and people say I'm much nicer. I imagine you'll get that benefit too once you get past the challenge of getting on the diet.

GFinDC Veteran

You can go gluten-free and stay with it. listening to your uncooperative side telling you negative things about your will power is not helpful to you. Instead tell your self the opposite, that you can do it just like many thousands of people do it. You are in control of this, not your cravings.

After you stick with the gluten-free diet a while the cravings will diminish. That may take a month or 6 months or more, but it will happen. It does matter if you are gluten-free or not. Read up on gluten ataxia and see what kind of effects it can have on a person's brain. You aren't grouchy for no reason. It could be your brain is being destroyed. There are lots of other reasons not to eat gluten, check out the list of associated conditions in the FAQ thread.

Remember, you only get one body to play around with in this life. If you screw it up there are no free replacements at the odd lots store. It's your choice, make it before it is too late.

Takala Enthusiast

Long answer or short answer ?

Short. If Doctor is actually saying that, = idiot.

Long. So far your cheating on gluten has caused your thyroid to fail. Keep it up and your continuing malnutrition damage will cause the pancreas and the mind will go, once that's gone, you won't be able to take care of yourself and your body will continue to break down.

Your diet needs a makeover, badly, if you are supposedly getting over cravings from missing consuming grain carbohydrates by eating gluten. You also need to be eating more vegetables (whether or not you feel like it) more protein, and more good fats, and less high glycemic index, "white," easily digestible starchy carb grains and less sugars. Also needed is a gluten free B complex vitamin, calcium and magnesium, all of which will help control cravings.

What is strange is that the things you are cheating with, can all be made gluten free. There isn't any reason I can think of to eat a gluten crust pizza. Gluten free Buns can be made easily fresh in the microwave or purchased fresh or frozen and thawed out. Fried rice can be made with gluten free tamari soy sauce, which is only made from soybeans. So you're obviously doing something wrong here with both the breakfast you eat and the mid morning snack, because by lunch you're doing fast food. Insulin resistance is really not fun. Breakfast needs to have some fat in it, like coconut milk in coffee, or coconut oil and/or olive oil, and some sort of naturally derived fiber such as a vegetable or beans or fresh fruit. Example: a celery stick with peanut butter should be added to it. Top dress it with some raisins or craisins. Cucumbers. Snap peas. Coleslaw broccoli with cinnamon. Pumpkin with a bit of butter or coconut milk, nutmeg and sweetener. Parsley. Hummus. Yes, vegetables early may not sound good, but they can keep you on track for the rest of the day. You should look at some of the ideas of the Specific Carbohydrate Diet. One good thing about transitioning to a lower carb diet, is that you can help tamp down sugar cravings this way. Fat is a slow burning fuel.

The irritability is a symptom of consuming gluten. Cravings and cheating are also symptoms of consuming gluten. But you don't really want to be doing this, or you wouldn't be here asking for help on how to stop doing this.

Make sure your thyroid meds are gluten free. Make sure anything ELSE you're taking is gluten free, because accidentally consuming trace gluten can be causing the whole problem with cravings.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kaki-clam Enthusiast

Yesterday was a rock bottom sort of day. I am to the point where i am aware that the little bit of gluten here and a little bit of gluten there is hurting me...back when this first started, it didn't bother me..so i am sure my intestines are like really??? You did this to us again????

I am an excellent cook (even if i do say so myself) and can, have and will continue to make my own gluten free treats such as hamburger buns, pizza and fried rice...i haven't quite perfected the egg roll though....i can make the spring roll, and it's great, but i can't fry it...it comes all a part, i did try using two rice paper wrappers and that didn't help so any suggestions on this might be good :)

Yesterday, my belly was so swollen, it was 7 inches larger than normal...so bad...even my sweat pants didn't fit!! Now, if that's not rock bottom, I don't know what is! So, i am going to take a week to go back to how i first ate when I was diagnosed, basically veggies and broth and chicken, see if i can't get myself to feeling a little better...then i'll add back in the "pasta" and "bread". I hope it won't take as long to heel this time.

As to my thyroid, i seriously hope that's not gluten related, but genetic. Thyroid issues and Diabetes run in my family. Even after being gluten free for 2.5 years, i still exhibit the symptoms of under active thyroid. I am just so damn afraid of needles, i never had my blood drawn after the whole celiac diagnosis to check!! The only reason it got checked recently is because my doctor ordered all tests she could think of that someone of my age and general well health might need so i would only have to go in once! Perhaps going gluten free and fixing my thyroid will put me back to feeling better again!!

oh, someone said something about my blood sugar....i only know my fasting blood sugar was 112, she didn't run any other tests for it except glucose....she's not super worried about it...just keeping an eye on it. After being gluten free for a while, i'll try to muster up the courage to get my blood done again and have it checked. :)

mamaw Community Regular

egg rolls::: I have never made these but I do know that FeelGoodFoods has shrimp, chicken, or vegetable egg rools gluten-free of course!I'm not a egg roll fan but I do like these...

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748

    Kim RS
    Newest Member
    Kim RS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.