Not sure where to go from here?

[LAR2017]

Hi All, 

Thank you for the informative forum. I've been reading articles here for a couple months now and they have answered some of my more desperate initial questions and fears. Apologies in advance for the book I'm about to write. I'm looking for a little advice and I'm not sure what is important and what isn't. 

I'm not sure if I have celiac disease or simply gluten intolerance. I didn't know I had either until about five months ago I accidentally went gluten-free while deliberately choosing a low-carb diet. I wasn't perfectly gluten-free of course, but I eliminated bread and major grain sources since they took up too many carbs on my new diet plan. I started keeping a food diary as well because I have a lifetime of IBS symptoms and was hoping to identify some triggers. I have type 2 Diabetes and at the time I started the diet my blood sugars, weight and carb cravings were spiraling out of control, but I couldn't take a second dose of Metformin because the first one was already causing me so much extra GI distress. I had severe heartburn (even water set it off and I had seen a cardiologist at one point because I couldn't go walking without chest pains), reflux, migraines, neck pain, "carpal tunnel" (in quotes because now I know it was inflammation), "plantar fasciitis", swollen and painful ankles that were so puffy it was like I had golf balls stuck under the skin-plus I couldn't walk when I woke up in the morning or after I had been sitting too long, without hobbling, and I couldn't walk and stand any time without severe pain, I had a slightly raised red area that covered my forearm that I thought was irritation from sun damage, sun sensitivity, hot flashes, muscle spasms/tics in my eyelids, constant fatigue, belly bloat and constant belly "talking" and growling, gas and continual cramping of one kind or another, swollen fingers (gave up rings and bracelets for fear I wouldn't be able to get them off), and of course several trips to the bathroom a day. I had been diagnosed and treated for: Gestational diabetes, T2D, PCOS, Vitamin D and B12 deficiency, lactose intolerance, gallstones (gall-bladder removed), IBS, Carpal Tunnel, Plantar Fasciitis, Peri-menopause (symptoms have disappeared), seasonal allergies that were year-round, heartburn and reflux. I have had abnormal liver readings that appear and disappear mysteriously, ESR readings are sometimes high, sometimes not, WBC count same. But it has been a while since I did any of those tests.

I did a bunch of tests about 7 years ago trying to track down the neck problems/migraines and the IBS. The answer always seemed to be: you are getting older, you need to exercise more and lose weight, maybe you are stressed. I did have a negative IGG test at that time but no other Celiac testing. I had a positive Lupus Anticoagulant test that wasn't really followed up on. Recently I had a negative ANA test and negative Rheumatoid Factor test. That was a relief because my Grandmother had RA and Crohn's and I really didn't want to follow in her footsteps. My ESR right now is normal but the C-Reactive Protein test from this week came back high at 14 and normal ranges 1-3. 

I didn't realize how bad it had actually gotten until a year ago I took a trip to Disney with my kids, my mother and my aunt. My mother ended up needing to be in a wheelchair and I wanted to be right beside her-I was popping Advil like they were candy and sitting on any bench that came in range-meanwhile my 75 year old aunt with Crohn's was literally running circles around us. So when my husband suggested we try a very low carb diet to see if we could shake things up, I was open to change. The second month on the diet I realized that a lot of my symptoms had disappeared or were considerably reduced. Particularly the GI symptoms and the ankle swelling. I still had some GI episodes and I started keeping a close watch on my food diary. I noticed every time I had Avocado Toast with low carb bread I would have a GI attack and the migraines for a couple days and the swelling and joint pain would come back the next day. I REALLY hoped it was the avocados. Or the garlic. Or the brand of bread. After experimenting I finally had to admit it was just bread in general.

By the third month I had cleaned all gluten out of my diet and now, in the 5th month I've lost 25 pounds, which is more than I was able to lose (even with prescribed diet pills) in 10 years. I still have Diabetes and supplement with Vit D, but just about everything else has cleared up and my blood sugar and cholesterol readings are great. The lactose intolerance and seasonal allergies are still there but much reduced. I'm having mild inflammation as I write this and a mild GI episode, somehow I either glutened myself this week or I have another allergy that I'm not aware of. I saw the GI Doc this week, it took me a couple months to get an appointment so I felt kind of silly outlining my past issues that I wasn't really experiencing any longer. She basically told me that in order to confirm celiac disease that  I would need to go back on gluten for a couple weeks and that there wasn't any kind of guarantee with the test. I had an endoscopy 7 years ago that was clean so she didn't see a point in re-doing it. She also didn't see a point in confirming the celiac disease as the treatment was what I was already doing-going on a gluten-free diet. I don't know whether to do anything from here or even WHAT I would do. The appointment was kind of deflating since I have experienced so many changes on the gluten-free diet that I feel like it is a HUGE deal. I guess I was looking for some validation in the form of a diagnosis, but I'm also concerned that ignoring it will lead to other problems down the road. I'm also not sure that allergy testing is valid and that possibly naturopaths aren't either-and none of the above is covered by insurance so I'm scared to spend money on them. I had gene testing through 23andme and I'm negative for the 2 big genes that are linked with Celiac, but positive for several minor ones. I know a lot of you have been down this road, so keep searching for answers or just relax and enjoy my gluten-free life? 

[Ennis-TX]

5 hours ago, LAR2017 said:

Hi All, 

Thank you for the informative forum. I've been reading articles here for a couple months now and they have answered some of my more desperate initial questions and fears. Apologies in advance for the book I'm about to write. I'm looking for a little advice and I'm not sure what is important and what isn't. 

I'm not sure if I have celiac disease or simply gluten intolerance. I didn't know I had either until about five months ago I accidentally went gluten-free while deliberately choosing a low-carb diet. I wasn't perfectly gluten-free of course, but I eliminated bread and major grain sources since they took up too many carbs on my new diet plan. I started keeping a food diary as well because I have a lifetime of IBS symptoms and was hoping to identify some triggers. I have type 2 Diabetes and at the time I started the diet my blood sugars, weight and carb cravings were spiraling out of control, but I couldn't take a second dose of Metformin because the first one was already causing me so much extra GI distress. I had severe heartburn (even water set it off and I had seen a cardiologist at one point because I couldn't go walking without chest pains), reflux, migraines, neck pain, "carpal tunnel" (in quotes because now I know it was inflammation), "plantar fasciitis", swollen and painful ankles that were so puffy it was like I had golf balls stuck under the skin-plus I couldn't walk when I woke up in the morning or after I had been sitting too long, without hobbling, and I couldn't walk and stand any time without severe pain, I had a slightly raised red area that covered my forearm that I thought was irritation from sun damage, sun sensitivity, hot flashes, muscle spasms/tics in my eyelids, constant fatigue, belly bloat and constant belly "talking" and growling, gas and continual cramping of one kind or another, swollen fingers (gave up rings and bracelets for fear I wouldn't be able to get them off), and of course several trips to the bathroom a day. I had been diagnosed and treated for: Gestational diabetes, T2D, PCOS, Vitamin D and B12 deficiency, lactose intolerance, gallstones (gall-bladder removed), IBS, Carpal Tunnel, Plantar Fasciitis, Peri-menopause (symptoms have disappeared), seasonal allergies that were year-round, heartburn and reflux. I have had abnormal liver readings that appear and disappear mysteriously, ESR readings are sometimes high, sometimes not, WBC count same. But it has been a while since I did any of those tests.

I did a bunch of tests about 7 years ago trying to track down the neck problems/migraines and the IBS. The answer always seemed to be: you are getting older, you need to exercise more and lose weight, maybe you are stressed. I did have a negative IGG test at that time but no other Celiac testing. I had a positive Lupus Anticoagulant test that wasn't really followed up on. Recently I had a negative ANA test and negative Rheumatoid Factor test. That was a relief because my Grandmother had RA and Crohn's and I really didn't want to follow in her footsteps. My ESR right now is normal but the C-Reactive Protein test from this week came back high at 14 and normal ranges 1-3. 

I didn't realize how bad it had actually gotten until a year ago I took a trip to Disney with my kids, my mother and my aunt. My mother ended up needing to be in a wheelchair and I wanted to be right beside her-I was popping Advil like they were candy and sitting on any bench that came in range-meanwhile my 75 year old aunt with Crohn's was literally running circles around us. So when my husband suggested we try a very low carb diet to see if we could shake things up, I was open to change. The second month on the diet I realized that a lot of my symptoms had disappeared or were considerably reduced. Particularly the GI symptoms and the ankle swelling. I still had some GI episodes and I started keeping a close watch on my food diary. I noticed every time I had Avocado Toast with low carb bread I would have a GI attack and the migraines for a couple days and the swelling and joint pain would come back the next day. I REALLY hoped it was the avocados. Or the garlic. Or the brand of bread. After experimenting I finally had to admit it was just bread in general.

By the third month I had cleaned all gluten out of my diet and now, in the 5th month I've lost 25 pounds, which is more than I was able to lose (even with prescribed diet pills) in 10 years. I still have Diabetes and supplement with Vit D, but just about everything else has cleared up and my blood sugar and cholesterol readings are great. The lactose intolerance and seasonal allergies are still there but much reduced. I'm having mild inflammation as I write this and a mild GI episode, somehow I either glutened myself this week or I have another allergy that I'm not aware of. I saw the GI Doc this week, it took me a couple months to get an appointment so I felt kind of silly outlining my past issues that I wasn't really experiencing any longer. She basically told me that in order to confirm celiac disease that  I would need to go back on gluten for a couple weeks and that there wasn't any kind of guarantee with the test. I had an endoscopy 7 years ago that was clean so she didn't see a point in re-doing it. She also didn't see a point in confirming the celiac disease as the treatment was what I was already doing-going on a gluten-free diet. I don't know whether to do anything from here or even WHAT I would do. The appointment was kind of deflating since I have experienced so many changes on the gluten-free diet that I feel like it is a HUGE deal. I guess I was looking for some validation in the form of a diagnosis, but I'm also concerned that ignoring it will lead to other problems down the road. I'm also not sure that allergy testing is valid and that possibly naturopaths aren't either-and none of the above is covered by insurance so I'm scared to spend money on them. I had gene testing through 23andme and I'm negative for the 2 big genes that are linked with Celiac, but positive for several minor ones. I know a lot of you have been down this road, so keep searching for answers or just relax and enjoy my gluten-free life? 

Sounds like Celiac....The gluten challenge you need to take to get tested properly and would be torture since your already gluten free......Even if not celiac you obviously have a inflammatory, immune, and gastrointestinal reaction to gluten so NCGS at least. Either way the gluten free life seems to be the proper route. I myself follow a keto/paleo diet, gluten free of course but I also avoid dairy due to intolerance and have another AI issue that reacts to sugars lol. IF you need help finding stuff or recipes I am great at finding low carb alternatives to past foods and punching those cravings out.

[ravenwoodglass]

Unfortunately you would have to do a lengthy and likely painful challenge to get any accurate celiac testing done and might still end up with a false negative.  It sounds like you are doing well and healing on the gluten free diet.  It can be tough but sometimes we just have to go with the 'diagnosis' our bodies are giving us. Do read the Newbie 101 thread at the top of the Coping section to be sure you are doing all you can do to heal. Perhaps ask your doctor or the GI to order vitamin and mineral panels for you and the GI may be willing to put 'Celiac' in your records to help keep you safe if you have to be hospitalized in the future.

You should also strongly encourage other family members to be tested as long as they are not already gluten free. Especially the relatives with RA. There is one celiac associated gene that is closely tied to RA diagnoses. I have that gene and was thought for a while to have RA. My RA symptoms went into remission gluten free. Minor Joint damage was already done but I now have pain free use of my hands and other joints.

[LAR2017]

Ravenwoodglass: Thank you for the reply. Glad to hear your symptoms went into remission!  I am amazed at all the things that just stopped without gluten to fuel the reaction. I do have the genes for RA, type 1 Diabetes, and auto-immune thyroid issues and Crohn's. I don't know how predictive that is in general. I'm trying to get my mom and sister to test since they have been fighting oddball health issues, including skin rashes and anemia, for years. They aren't believers yet. Part of why I was hoping to get a firmer diagnosis. I will read the Coping section-thanks. GI didn't have much for me except probiotics. She wouldn't put Celiac in the records without a positive test, or gluten allergy either since intolerance isn't an allergy. I'll talk to her again about that. Hadn't thought about the hospitalization angle. 

[LAR2017]

Enis_TX: Thank you for the reply. I'm doing Atkins/Keto/Paleo combos so I would love recipes or tips! I started with Atkins but they use a lot of sugar alcohols in their products and those don't agree with me. I still use the tracker but I've switched to more fats with the Keto macros rather than the higher protein. I'm staying under 25 net carbs a day and try to keep it under 20. I have good days and bad days with that. Some of the Keto and Paleo rules aren't for me but I find a lot of their recipes helpful and try to embrace the whole/non-processed foods philosophy.  I wondered how much worse it would be to go back on gluten now that I'm off of it. The first couple weeks of going low carb were truly terrible-I certainly don't want to do anything that will send me back to carb addiction and cravings. It's funny, I've never really struggled with addiction- didn't smoke, didn't drink (couldn't really-alcohol makes me feel terrible) but I never really considered carbs and gluten as a deadly addiction-yet here I am. Out of curiosity, what kind of AI issue reacts to sugar? 

[Ennis-TX]

51 minutes ago, LAR2017 said:

Enis_TX: Thank you for the reply. I'm doing Atkins/Keto/Paleo combos so I would love recipes or tips! I started with Atkins but they use a lot of sugar alcohols in their products and those don't agree with me. I still use the tracker but I've switched to more fats with the Keto macros rather than the higher protein. I'm staying under 25 net carbs a day and try to keep it under 20. I have good days and bad days with that. Some of the Keto and Paleo rules aren't for me but I find a lot of their recipes helpful and try to embrace the whole/non-processed foods philosophy.  I wondered how much worse it would be to go back on gluten now that I'm off of it. The first couple weeks of going low carb were truly terrible-I certainly don't want to do anything that will send me back to carb addiction and cravings. It's funny, I've never really struggled with addiction- didn't smoke, didn't drink (couldn't really-alcohol makes me feel terrible) but I never really considered carbs and gluten as a deadly addiction-yet here I am. Out of curiosity, what kind of AI issue reacts to sugar? 

In my case Ulcerative Colitis for me reacts to fructose, glucose, and sucrose....in addition to the common triggers I am already avoiding. Sugars/carbs/starches cause a type of flare up. IT becomes apparent with I get anemic and start shitting blood and mucus. Keto it went from globs of blood, extreme anemia, to the occasional streaks in the stools. I still sometimes get too much via seeds, coconut flour, and sugar alcohols but streaks and drips beats globs and anemia any day lol. OH if your looking for a premade bread, mixes, etc. Look up Julian Bakery especially if you want to avoid starches and sugar alcohols. If you do not mind sugar alcohols Knowfoods has some stuff....I preferred Julian before my bakery I run reverse engineered their bread and started selling it >.> I also came up with a lemon bread recipe, dinner rolls, etc by accident trying to make their bread lol.
https://www.celiac.com/gluten-free/blogs/blog/1202-gluten-free-and-specialty-diet-recipes/

[cyclinglady]

While a diagnosis is nice to have, it is possible to remain gluten free and LCHF.  My hubby has been for over 16 years (long before my diagnosis).  There is no way he would consider a challenge (we like to pay our bills!) 

Just because you have the genes to develop something, does not mean it can happen to you.  About 35% or so of the population carries the genes that can develop into celiac disease, but only a tiny fraction (about 1% or more) actually do.  

Get a meter from Walmart (with a TD2 diagnosis, you should qualify for one)  and start testing foods.  What affects you might not affect me!  We are each unique.  With a history of gestational diabetes, you should monitor for LADA (type 1 adult onset).  Too many doctors take a look at weight and assume Type 2.  

Make sure those probiotics are gluten free!  

Welcome to the forum.  

[LAR2017]

4 hours ago, cyclinglady said:

While a diagnosis is nice to have, it is possible to remain gluten free and LCHF.  My hubby has been for over 16 years (long before my diagnosis).  There is no way he would consider a challenge (we like to pay our bills!) 

Just because you have the genes to develop something, does not mean it can happen to you.  About 35% or so of the population carries the genes that can develop into celiac disease, but only a tiny fraction (about 1% or more) actually do.  

Get a meter from Walmart (with a TD2 diagnosis, you should qualify for one)  and start testing foods.  What affects you might not affect me!  We are each unique.  With a history of gestational diabetes, you should monitor for LADA (type 1 adult onset).  Too many doctors take a look at weight and assume Type 2.  

Make sure those probiotics are gluten free!  

Welcome to the forum.  

Thanks for the reply Cyclinglady. Do you mean a blood sugar meter or something else? My husband actually has LADA/type 1.  Worth keeping in mind as I hadn't considered it before. Good point about checking for gluten. I did myself in with gummy vitamins for a while before I thought to look. 

[cyclinglady]

2 hours ago, LAR2017 said:

Thanks for the reply Cyclinglady. Do you mean a blood sugar meter or something else? My husband actually has LADA/type 1.  Worth keeping in mind as I hadn't considered it before. Good point about checking for gluten. I did myself in with gummy vitamins for a while before I thought to look. 

Yes, a blood glucose meter.  Consider reading the Newbie 101 thread located at the top of the “Coping” section for valuable tips.  Everything that you ingest must be gluten free.  

 

[LAR2017]

1 hour ago, cyclinglady said:

Yes, a blood glucose meter.  Consider reading the Newbie 101 thread located at the top of the “Coping” section for valuable tips.  Everything that you ingest must be gluten free.  

 

Ah. I wondered if there was a gluten meter than I hadn't heard of. I test for glucose 3-4x a day. Especially when I started the diet and the food diary. I wanted to see where my sugars were going with the LCHF diet. I haven't noticed non-carb related spikes with particular foods with the exception of peanut butter. Even if I keep within the carb allowance for the meal that stuff will shoot up my BLS readings like crazy. Keto and Paleo both recommend not eating peanuts since they are legumes and not nuts. Maybe they have a point.