Question.... Newly diagnosed celiac

[Aprilmon]

I am newly diagnosed celiac. Now that I know this all this, the weird puzzle pieces now fit ( the neoupathy , digestive issue, anemia/pica, the dematitis herpaformitis ((always blistering in the exact same spot), the moth balls smelling poo,etc)). I have been so excited and even though the change will be hard , I'm relieved that diet changes could be the answer to feeling like a normal person does. That said, I'm going through MAJOR gluten free withdrawals. I'm so fatigued , muscle crampy , brain fogged , and straight miserable. This has led me to think about this a little different. This episode feels like when I have major digestive issue that I assume were the gluten allergy part along with all the rest. But I'm doing gluten-free now hoping to improve the future. I had been having some flare ups which made me feel like I just couldn't make it anymore. This now happening while going gluten free is making me wonder if my really bad episodes in the past , that literally would make me not even be able to get out bed ....if maybe those happened because unknowingly I just ate vegtables for a few days ....maybe gluten withdrawals were behind the most horrible parts. Anyone think that's possible?? I'll still continue gluten free to get rid of the other problems. I'm hoping that once I get there. My worst days will be gone because I won't have withdrawals again either. I'm sorry , I feel like this is all jumbled. Hopefully I made my point in question. Just wondering if I was looking at this backwards, even though I am celiac...could my worst episodes have been because I had no gluten intake that continued because by then I was too sick to eat anything . All options and advice welcome , and ty!!.....I never would have thought gluten withdrawals were a thing 😐

[trents]

I'm not so sure about the concept of "gluten withdrawal." I would guess what you are experiencing is actually due to accidental or unintentional gluten exposure. There is a real learning curve involved with consistently avoiding gluten. It shows up in processed foods that you would never expect to find it in. Examples: Campbells tomato soup, most soy sauces, some chocolate syrups, medications and supplements.

I would also recommend that you start taking a gluten free adult multivitamin along with a high-potency B complex, D3 and magnesium stearate. Celiac disease typically causes vitamin and mineral deficiencies. Costco's Nature Made product line of vitamins and supplements are generally gluten free.

[GodsGal]

25 minutes ago, Aprilmon said:

I am newly diagnosed celiac. Now that I know this all this, the weird puzzle pieces now fit ( the neoupathy , digestive issue, anemia/pica, the dematitis herpaformitis ((always blistering in the exact same spot), the moth balls smelling poo,etc)). I have been so excited and even though the change will be hard , I'm relieved that diet changes could be the answer to feeling like a normal person does. That said, I'm going through MAJOR gluten free withdrawals. I'm so fatigued , muscle crampy , brain fogged , and straight miserable. This has led me to think about this a little different. This episode feels like when I have major digestive issue that I assume were the gluten allergy part along with all the rest. But I'm doing gluten-free now hoping to improve the future. I had been having some flare ups which made me feel like I just couldn't make it anymore. This now happening while going gluten free is making me wonder if my really bad episodes in the past , that literally would make me not even be able to get out bed ....if maybe those happened because unknowingly I just ate vegtables for a few days ....maybe gluten withdrawals were behind the most horrible parts. Anyone think that's possible?? I'll still continue gluten free to get rid of the other problems. I'm hoping that once I get there. My worst days will be gone because I won't have withdrawals again either. I'm sorry , I feel like this is all jumbled. Hopefully I made my point in question. Just wondering if I was looking at this backwards, even though I am celiac...could my worst episodes have been because I had no gluten intake that continued because by then I was too sick to eat anything . All options and advice welcome , and ty!!.....I never would have thought gluten withdrawals were a thing 😐

Hi Aprilmon,

Welcome! How long have you been gluten free? I am glad that you are excited about this new journey. You will have highs and lows along the way. And that's totally normal.

I remember how overwhelmed I felt when I first started. I tell people it was like I was trying to get a drink of water from a high pressure water hose!

Sometimes those of us with celiac have developed other food intolerances as well. Have you eliminated dairy and oats? I have also had trouble with certain raw vegetables in the past. Raw broccoli, raw cauliflower, and iceberg lettuce have been majorly problematic. Cucumbers have also caused problems from time to time. But as my gut heals, I may be able to tolerate them again.

Also, if you don't live alone, then you need to make sure that you have your own dedicated "gluten free" cooking utensils, pots and pans, toaster, etc. And they need to be stored separately from anything in which glutenous items are prepared.

You should check for gluten in your toothpaste, any medications, soaps, detergents, shampoos, conditioners, lotions, and cosmetics. And don't forget to change your toothbrush. My skin has done much better since I made these changes.

Also, when you are just starting out, it can take awhile for your body to adjust and to heal. 

Make sure you read the ingredient labels on food items before you buy them. Look for gluten free certification marks. 

Make sure you take a breath, and give yourself plenty of grace. You can do this!

Keep us posted!

 

[Aprilmon]

Thx. It's only been 4 days. But I feel very faintish today. Raw veggies started being a problem for me about a year ago, so I basically cut those to baby bites here and there. Maybe too much damage has been done to digest them well?? Idk.....but thx for the encouragement!!! I really appricate it . Good luck to you as well

[GodsGal]

2 hours ago, Aprilmon said:

Thx. It's only been 4 days. But I feel very faintish today. Raw veggies started being a problem for me about a year ago, so I basically cut those to baby bites here and there. Maybe too much damage has been done to digest them well?? Idk.....but thx for the encouragement!!! I really appricate it . Good luck to you as well

You are welcome!

I'm not a medical professional. But my understanding is that the damage leads to malabsorption and leaky gut issues. The leaky gut can then lead to more food intolerances. And some of the intolerances may improve as your gut heals.

You said you are feeling faintish today. Is it from feeling overwhelmed with lots of information and changes? Or, do you think it is more related to the new diet? Have you seen a dietitian yet? Are you aware of any vitamin/ mineral deficiencies or blood sugar problems? It could just be your body adjusting. But, I would suggest that you follow up with your doctor.

I know that it is challenging right now. Keep up the good work!

[trents]

Aprilmon, are you on PPI therapy by any chance? Raw veggies can be difficult to digest, especially if you have low stomach acid and your gut biome is out of balance. Many who have celiac disease have GERD and have been put on Proton Pump Inhibitors which raise stomach PH and cause changes in the mix of microbes. You may be low on the microbes that break down the the complex starches found in many vegetables. I have some trouble with that too. Especially things like raw broccoli and cauliflower. 

[Wheatwacked]

How do we explain the depression, nausea, headaches, lightheadedness, dehydration, emotional outbursts, intensive wheat cravings, bloating, constipation, even intensification of joint pain, effects that are not likely attributable to hypoglycemia or poor mobilization of energy? Delayed ramp-up of fatty acid oxidation is indeed part of the reason for the phenomena of wheat withdrawal, but does not explain all of it...Most of these phenomena are caused by withdrawal from the gliadin-derived opiates in wheat, the 4- to 5-amino acid long polypeptides that increase appetite and cause addictive eating behaviors. You can actually trigger the syndrome abruptly in someone who is not wheat-free by giving them naloxone or naltrexone, opiate-blocking drugs. Because it is a form of opiate withdrawal.   https://www.wheatbellyblog.com/2013/09/surviving-wheat-withdrawal/

[Kate333]

Hi Aprilmon.   I've never heard of "gluten withdrawal" symptoms, but you will not find a dearth of medical opinions on the internet, many from people who offer speculative advice backed up with little or no medical training.  So its wise to always consult with your docs before drawing any conclusions about your condition/symptoms. 

Trents and Godsgal advice is spot on!  It is totally natural to feel overwhelmed after this diagnosis and having to adjust to a strict gluten-free diet, not to mention having to cope with all that during the additional stress of living in a scary pandemic.  So, of course, your anxiety is also spiking, which can affect your entire body system.   Anxietycentre.com has a wonderful website which describes in detail how our stress levels can manifest in many different physical symptoms.   

As a relative newbie myself, I advise you to give yourself (and your body and mind) kindness and the patience, time, and space to heal as you learn about, and adapt to, the gluten-free diet.  Healing from celiac disease can take awhile before you even begin to notice improvement.   That's normal and okay. 

Best of luck on your healing journey!

[notme]

i had gluten withdrawal when i went gluten free.  some people do, some do not.  i know what withdrawal feels like bc i was a heroin addict a very long time ago.  take it day by day, eat clean, and pay attention because you will start feeling better a little at a time, each day a little better.  rest (i slept a LOT) and eat small, unprocessed meals.  try to keep a food journal - if not to see what digests well, just to note and be able to 'see' that you are improving.  i got over the wd's in about 2 weeks.  hang in there, it's worth the work/changes.  you're gonna feel fantastic.   

[Aprilmon]

On 8/29/2021 at 7:59 PM, trents said:

Aprilmon, are you on PPI therapy by any chance? Raw veggies can be difficult to digest, especially if you have low stomach acid and your gut biome is out of balance. Many who have celiac disease have GERD and have been put on Proton Pump Inhibitors which raise stomach PH and cause changes in the mix of microbes. You may be low on the microbes that break down the the complex starches found in many vegetables. I have some trouble with that too. Especially things like raw broccoli and cauliflower. 

I'm on omeperzole... And I did start a probiotic as well. I'm actually feeling a little better. I'm only shaky in the mornings and have a constant dull headache, but thankfully the servere n

 

On 8/29/2021 at 3:13 PM, GodsGal said:

You are welcome!

I'm not a medical professional. But my understanding is that the damage leads to malabsorption and leaky gut issues. The leaky gut can then lead to more food intolerances. And some of the intolerances may improve as your gut heals.

You said you are feeling faintish today. Is it from feeling overwhelmed with lots of information and changes? Or, do you think it is more related to the new diet? Have you seen a dietitian yet? Are you aware of any vitamin/ mineral deficiencies or blood sugar problems? It could just be your body adjusting. But, I would suggest that you follow up with your doctor.

I know that it is challenging right now. Keep up the good work!

ausea is gone. Dark days have gotten a tad bit brighter.... Think im going to have to try to cut out dairy for a bit(there's nothing left to eat!!! Lol). Seriously though thank you for the advice and info. I truly don't know how I'd make it without this website right now💕

[Aprilmon]

2 minutes ago, Aprilmon said:

I'm on omeperzole... And I did start a probiotic as well. I'm actually feeling a little better. I'm only shaky in the mornings and have a constant dull headache, but thankfully the servere n

 

ausea is gone. Dark days have gotten a tad bit brighter.... Think im going to have to try to cut out dairy for a bit(there's nothing left to eat!!! Lol). Seriously though thank you for the advice and info. I truly don't know how I'd make it without this website right now💕

Sorry. I think I posted to the wrong reply with that one.

 

But to Godsgal.... The faint feeling is from a sugar drop type feeling.  I've really found your advice helpful . The info is all great, but that overwhelm is contributing more to the just lingering anxious feeling I keep finding in me that I didn't used to have. I know it's all a process and time is everything.ive called two nutritionist in town but neither were familiar with celiac information. ( I live in a small town, so I'll probably end up having to outsource to a neighboring city. I honestly think if I knew what I was eating, and what I'm getting out of it, along with getting my blood test levels back, I'll be more confident in knowing I'm doing what my body needs and not still robbing myself of something. My iron was really really low ( I would eat like 5large cups of ice a day. I'm sure I'm on the up in getting that fixed. The malabsorption can just cause so many extended problems. I never ever thought gluten could be the begining one culprit of it all ....thank you so much for all the time you've taken to help me feel better about staying on this path !! 💕....also sorry for all the randomness, it's just too much to communicate in the right way for so early in ...ty ty !

[Aprilmon]

On 9/1/2021 at 6:38 PM, Kate333 said:

Hi Aprilmon.   I've never heard of "gluten withdrawal" symptoms, but you will not find a dearth of medical opinions on the internet, many from people who offer speculative advice backed up with little or no medical training.  So its wise to always consult with your docs before drawing any conclusions about your condition/symptoms. 

Trents and Godsgal advice is spot on!  It is totally natural to feel overwhelmed after this diagnosis and having to adjust to a strict gluten-free diet, not to mention having to cope with all that during the additional stress of living in a scary pandemic.  So, of course, your anxiety is also spiking, which can affect your entire body system.   Anxietycentre.com has a wonderful website which describes in detail how our stress levels can manifest in many different physical symptoms.   

As a relative newbie myself, I advise you to give yourself (and your body and mind) kindness and the patience, time, and space to heal as you learn about, and adapt to, the gluten-free diet.  Healing from celiac disease can take awhile before you even begin to notice improvement.   That's normal and okay. 

Best of luck on your healing journey!

Ty so so much. This site and you people have been a godsend....patience and time will really be the key.  I found out the problem and was so happy. I thought easy peazy. I'll eat right a boom I'll be better lol......nope. the work has just started but thanks to all the answers you guys have given me, I'll have determination to keep going and get to the good place soon enough 💕

[Wheatwacked]

29 minutes ago, Aprilmon said:

I honestly think if I knew what I was eating, and what I'm getting out of it,

I felt the same. This link  http://nutrientlog.doodlesnotes.net/  is to a spreadsheet I created a July 2020 of what I eat and the nutrient values of each calcutated to quantity. I've only posted data since July 2021. It helped me because I calculted daily totals. Do not know yet how to make it interactive, but it will give you an idea of whats in what you eat. For the values I use the national database SR21. FoodData Central (usda.gov)   https://fdc.nal.usda.gov/.

Nutrition Facts & Calories (self.com)   https://nutritiondata.self.com/facts/sausages-and-luncheon-meats/1376/2 lets you use preset servings.

 

[Boymom30]

I too have been recently diagnosed, I’m a 24 year old new mom. Previously in my younger teens was diagnosed with IBS and gallbladder issues, but never found relief. Now with this celiac diagnoses it’s insane how many symptoms I’ve had that have been unexplained and now have a reason. I not only suffer from digestive issues but I get a HORRIBLE rash on my legs . I feel relieved to have answers and I think it’s crazy how many problems I’ve had no doctors could answer that I now associate with celiac. I’m new to this though and have cut out gluten but I feel I’m so highly sensitive to it that I’m nervous to eat anything that isn’t fresh. This site has already helped me so much I’ve been looking for a community that can help and I think I’ve found it! Thank you! I do have a question for all of you though and it’s personal and gross but I’ve had green poop for about 4 days now. Doesn’t matter what type of poop it is ie runny or solid it’s green and I haven’t eaten a lot of green veggies before you ask lol. Can someone help me understand if this is related to my celiac or what

[plumbago]

15 minutes ago, Boymom30 said:

I too have been recently diagnosed, I’m a 24 year old new mom. Previously in my younger teens was diagnosed with IBS and gallbladder issues, but never found relief. Now with this celiac diagnoses it’s insane how many symptoms I’ve had that have been unexplained and now have a reason. I not only suffer from digestive issues but I get a HORRIBLE rash on my legs . I feel relieved to have answers and I think it’s crazy how many problems I’ve had no doctors could answer that I now associate with celiac. I’m new to this though and have cut out gluten but I feel I’m so highly sensitive to it that I’m nervous to eat anything that isn’t fresh. This site has already helped me so much I’ve been looking for a community that can help and I think I’ve found it! Thank you! I do have a question for all of you though and it’s personal and gross but I’ve had green poop for about 4 days now. Doesn’t matter what type of poop it is ie runny or solid it’s green and I haven’t eaten a lot of green veggies before you ask lol. Can someone help me understand if this is related to my celiac or what

Contrast agent, medication, or bile?

[cristiana]

8 minutes ago, plumbago said:

Contrast agent, medication, or bile?

Yes... I was thinking bile.  

This site attributes this to food moving through the system too quickly.

"Stool color is generally influenced by what you eat as well as by the amount of bile — a yellow-green fluid that digests fats — in your stool. As bile pigments travel through your gastrointestinal tract, they are chemically altered by enzymes, changing the pigments from green to brown."

https://www.mayoclinic.org/stool-color/expert-answers/faq-20058080#:~:text=Possible dietary causes-,Green,colored%2C white or clay-colored

[Wheatwacked]

Raw vegies slows peristalsis. Fiber absorbs the bile which is made from cholesterol so the liver converts more cholesterol into bile, possibly lowering your total cholesterol.

[GodsGal]

5 hours ago, Boymom30 said:

I too have been recently diagnosed, I’m a 24 year old new mom. Previously in my younger teens was diagnosed with IBS and gallbladder issues, but never found relief. Now with this celiac diagnoses it’s insane how many symptoms I’ve had that have been unexplained and now have a reason. I not only suffer from digestive issues but I get a HORRIBLE rash on my legs . I feel relieved to have answers and I think it’s crazy how many problems I’ve had no doctors could answer that I now associate with celiac. I’m new to this though and have cut out gluten but I feel I’m so highly sensitive to it that I’m nervous to eat anything that isn’t fresh. This site has already helped me so much I’ve been looking for a community that can help and I think I’ve found it! Thank you! I do have a question for all of you though and it’s personal and gross but I’ve had green poop for about 4 days now. Doesn’t matter what type of poop it is ie runny or solid it’s green and I haven’t eaten a lot of green veggies before you ask lol. Can someone help me understand if this is related to my celiac or what

I'm glad to be a part of "your community!" I know that you are leaning towards eating fresh, which is good. 😊 How long have you been gluten free?

I'm not a medical professional. So this is not medical advice. I have personally seen similar colors of bowel movements after eating foods with food coloring. So, it could be celiac. But it could also just be from something you ate or drank. Have you introduced anything new in the past week or so? My general rule of thumb for myself is that if I am feeling concerned about something that isn't clearing up, then I consult with my doctor. 

[GodsGal]

15 hours ago, Aprilmon said:

The faint feeling is from a sugar drop type feeling. 

Hi Aprilmon, 

That's not a fun feeling. 😐 Have you tried increasing your protein intake? I have noticed that if I eat a sugary breakfast with little protein, then I can start to feel like I am having a sugar crash a few hours later. Also, I carry snacks with me so that if I do start to feel a little shaky, I have something safe to eat. 

[Boymom30]

7 hours ago, GodsGal said:

I'm glad to be a part of "your community!" I know that you are leaning towards eating fresh, which is good. 😊 How long have you been gluten free?

I'm not a medical professional. So this is not medical advice. I have personally seen similar colors of bowel movements after eating foods with food coloring. So, it could be celiac. But it could also just be from something you ate or drank. Have you introduced anything new in the past week or so? My general rule of thumb for myself is that if I am feeling concerned about something that isn't clearing up, then I consult with my doctor. 

I just started only a few weeks, and I know blue food coloring can turn it green and green veggies, and I  wouldn't be a concerned but its been 4 days so I found that odd I think I may take your advice and just call my doctor tomorrow. 

[plumbago]

Soluble fiber (pectins (eg, the inside of an apple), gums, muscilages (certain fruit seeds like pomegranate; oatmeal) does lower cholesterol by binding with bile and does slow digestion, true.

However, insoluble fiber (cellulose, hemicellulose, lignans) like stalks, outer covering of nuts, skin of apple accelerates fecal transit time through the GI tract via bulk and it exercises colon. 

On 9/8/2021 at 1:02 PM, Wheatwacked said:

Raw vegies slows peristalsis. Fiber absorbs the bile which is made from cholesterol so the liver converts more cholesterol into bile, possibly lowering your total cholesterol.