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Thinking about giving up

kam00096

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kam00096 Contributor
kam00096
Posted

Hi, I'm really struggling and would love some input from you guys (I have posted on here before... usually when I'm feeling crappy!). 

I had 2 sets of blood tests come back for celiac around 18 months ago. Because of  the NHS being hopeless I had to go gluten free straight away and haven't been able to do a gluten challenge, so don't actually have a diagnosis, although a number of doctors have said celiac is likely. 

Before the blood tests I'd had a really rough couple of years with a whole range of symptoms which tended to get worse for a few months, then somewhat better, and then worse again. The main problems were dizziness, severe nausea, never going to the bathroom properly, exhaustion and muscle/ joint pain (I also have swollen lymph nodes, silent reflux, night sweats and various other symptoms). 

I'd hoped going gluten free would clear everything up but it hasn't at all. I'm still going through the same cycle of being ok, then ill again. For the last 6 weeks or so I've been having a bad spell and I feel horrible. 

I've been pretty strict about staying gluten free, I never cheat, I check everything I eat and I rarely eat out so I can't work out why I'm still sick?! Also  the one or two times I know that I did accidentally get a small amount of gluten (in the early days) it didn't make any noticeable difference to my symptoms (so I still felt my usual kind of crappy but not really any worse afterwards). 

I'm starting to think I either don't have celiac at all or I have it and something else as well. Trouble is my docs have tested me for lots of things and have run out of patience with me now. My dad has Parkinson's and I'm worried it might be that or MS or something else which affects your whole system. Quite frankly I'm sick of being gluten free when it's not helping at all. 

Between the restricted diet and the non-stop feeling ill I'm scared to travel, or go to things and I'm barely managing to function at work. My spare time is spent sleeping (badly) because I'm so shattered all the time. I don't know what to do any more... 

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Victoria1234 Experienced
Victoria1234
Posted

You might be an extremely sensitive celiac who needs a more specific diet detailed here

 

tessa25 Rising Star
tessa25
Posted

I'd start with eggs and potatoes for breakfast, and homemade soup or stew for lunch and dinner. With water as your only drink. You can cook the soup and stew once per week. If you can go a month like that then ask yourself if your symptoms have calmed down at all. If they have then you can stick it out as long as you can or keep a food log and add on a new ingredient every 3 days. Drop anything that makes you worse.

I'd suggest you get your celiac numbers checked and keep a copy of the results. Then check again every month to see if the numbers are going down. But I don't know if you can do that outside the US. The positive feedback of seeing your numbers decrease would help you.

ccrew99 Apprentice
ccrew99
Posted

I understand how you feel. I wasn't "officially diagnosed" celiac but had enough evidence that my docs and I put 2 and 2 together due to what we conconcluded to be DH, plus a gene test and positive blood work. I never did biopsy bc they said the ones with DH have a harder time getting diagnosed and I had enough proof for myself to never get back on gluten. That being said I was deathly ill for a few years even after going gluten free. I finally got diagnosed with POTS , which is what has made me the sickest. I had many of the symptoms you did and also started to believe I was getting MS. Scared the H out of me. I really don't have a lot of answers but I really believe that having "celiac" for so many years undiagnosed cascaded into this.  I have severe problems with muscle cramps, pulling and not healing plus many many more symptoms like the ones you described.   I would definitely stay off gluten bc staying on it could make things worse and you may end up with more problems. Check out POTS and see if you relate.  I never had severe Celiac symptoms like other people but learned that some of us don't. So just bc you don't really feel any different off of gluten doesn't mean that it wasn't doing damage. I think you have enough evidence to prove that your body doesn't like gluten so I would stay off!!! Don't give up!!!

TexasJen Collaborator
TexasJen
Posted

I'm sorry you are feeling so poorly! I agree with the advice above..... I think rechecking the antibodies is a great start. If they are negative, you have confirmation that your diet is at least on the right track. You can pursue an elimination diet to determine if you are getting some very mild cross contamination.  If they are still positive then, back to the drawing board with your diet. 

If the antibodies are negative and the elimination diet doesn't work, look for another diagnosis......

kam00096 Contributor
kam00096
Posted
  • Author

Thank you for the replies. I'm going to go back to the doctor and ask them to check my levels. Really reluctant to restrict my diet any more when I'm not even convinced it is celiac but I will if I have to. Was meant to be planning a holiday abroad (first in 10 years!) this weekend but between struggling to find decent places for gluten free (within budget) and feeling absolutely disgusting am thinking of calling the whole thing off. Can barely get up and down my stairs today :( 

Lyss Newbie
Lyss
Posted
7 hours ago, kam00096 said:

Thank you for the replies. I'm going to go back to the doctor and ask them to check my levels. Really reluctant to restrict my diet any more when I'm not even convinced it is celiac but I will if I have to. Was meant to be planning a holiday abroad (first in 10 years!) this weekend but between struggling to find decent places for gluten free (within budget) and feeling absolutely disgusting am thinking of calling the whole thing off. Can barely get up and down my stairs today :( 

Hey friend, so sorry you're struggling with this. It can be frustrating trying to figure out what going on with our bodies. Have you looked into eating Paleo and cutting out grains altogether? My hypothyroidism/hashimottos didn't clear until I cut out all grains (just cutting gluten is not enough). The way grains are sprayed, processed, and prepared modernly wreaks havoc on our bodies (particularly our thyroids which in turn cause the symptoms you mentioned). I would try it for 30 day and see how you feel. Anyway, hope you get it figured out! 

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TexasJen Collaborator
TexasJen
Posted

Can I say that I don't think you have to stop planning your dream vacay just because you need to eat gluten-free (feeling bad - I understand that) I just got back from 2 weeks in the northeast. Careful planning and an extremely boring diet and I ate very safe the entire time. I didn't eat in a single restaurant though except a completely gluten-free restaurant I found.

Breakfast - in my room with mini fridge - cereal (Rice chex), milk, fruit

Lunch- Kind bar, dipped in Individual Jif peanut butter container, fruit, yogurt. 

Dinner - a mix of things - usually canned gluten-free soup, beans and rice, fruit, nuts, cold veggies. Stuff you can prepare with a microwave.  

Not exciting at all. Had to watch my family eat many meals out. Was happy to be home eating a wider variety of foods. BUT, I got to see a lot of distant relatives, go on some fun adventures, and introduce my kids to different kinds of food that they won't see in Texas. Definitely worth the sacrifice!

 

JoyVale Newbie
JoyVale
Posted
On 8/3/2017 at 6:39 PM, kam00096 said:

Hi, I'm really struggling and would love some input from you guys (I have posted on here before... usually when I'm feeling crappy!). 

I had 2 sets of blood tests come back for celiac around 18 months ago. Because of  the NHS being hopeless I had to go gluten free straight away and haven't been able to do a gluten challenge, so don't actually have a diagnosis, although a number of doctors have said celiac is likely. 

Before the blood tests I'd had a really rough couple of years with a whole range of symptoms which tended to get worse for a few months, then somewhat better, and then worse again. The main problems were dizziness, severe nausea, never going to the bathroom properly, exhaustion and muscle/ joint pain (I also have swollen lymph nodes, silent reflux, night sweats and various other symptoms). 

I'd hoped going gluten free would clear everything up but it hasn't at all. I'm still going through the same cycle of being ok, then ill again. For the last 6 weeks or so I've been having a bad spell and I feel horrible. 

I've been pretty strict about staying gluten free, I never cheat, I check everything I eat and I rarely eat out so I can't work out why I'm still sick?! Also  the one or two times I know that I did accidentally get a small amount of gluten (in the early days) it didn't make any noticeable difference to my symptoms (so I still felt my usual kind of crappy but not really any worse afterwards). 

I'm starting to think I either don't have celiac at all or I have it and something else as well. Trouble is my docs have tested me for lots of things and have run out of patience with me now. My dad has Parkinson's and I'm worried it might be that or MS or something else which affects your whole system. Quite frankly I'm sick of being gluten free when it's not helping at all. 

Between the restricted diet and the non-stop feeling ill I'm scared to travel, or go to things and I'm barely managing to function at work. My spare time is spent sleeping (badly) because I'm so shattered all the time. I don't know what to do any more... 

If you really, really want to get to the core of this problem, strip down your diet. Right down to the bone. Go on a strict low carb diet. Absolutely no carbs or starches for 3 weeks. See if you feel phenomenal, because you will. Then, introduce one carb at a time. Schedule one carb every 3 days. Make a list. I promise you'll find what foods are ailing you. It'll be tough, but you will absolutely find what foods bother you and which ones don't. 

maseymn Rookie
maseymn
Posted

I was not formally diagnosed. I tested positive for antibodies, and my doctor said if I feel better on a gluten-free diet that was confirmation enough for her. I didn't want to wait. Since then they've wanted to have me do a "challenge" and a small intestine biopsy, but I told the doctor I'm just not that curious. I know what's wrong with me, and a gluten free diet fixes it. I'll never eat gluten again as long as I live.

Some celiacs have a sensitivity to dairy as well as gluten, and have to give up both to be symptom free. For years I was okay on just a gluten-free diet, but I now have had to give up dairy as well, as I keep getting a mild gluten-type reaction now when I have dairy. I am very sensitive and had a lot of trouble initially with cross contamination and mild gluten reactions that went on for weeks. I had to make sure my dish soap and dishwasher detergent were gluten-free, my toothpaste, I had to quit wearing chapstick, lipstick and lipgloss, and for whatever reason, I get a gluten reaction from some yellow dyes so I can't eat yellow candy (m&ms etc) or yellow medications. I had (and still have) a terrible time with prescription medications. Once I find one I don't react to, they are not allowed to change the prescription in any way! I can't set a spoon down on the counter and then use it again -- I have to get a clean spoon, or else I will react to any contaminants on the counter. It's ridiculous, but I feel so much better that it's worth the extra time and effort.

Some of what you are dealing with might be some vitamin and mineral deficiencies. Maybe your doctor can check on that for you -- remember if you are celiac you haven't been absorbing things for years. I had a pretty severe magnesium and potassium deficiency, as well as an iron and vitamin D deficiency that took awhile to clear up; I had some health problems until I started supplementing. 

Good luck. If you had antibodies in your blood, you most likely have celiac. It's not impossible that you might have something else going on, but it sounds like a lot of the same problems I've had with celiac. It sounds to me like you are getting glutened from something you just haven't caught yet. I hope you figure things out.

Mermaid's Mom Enthusiast
Mermaid's Mom
Posted

You should research SIBO.  It sounds identical to what you are describing and also has Gluten intolerance as a symptom.  I put my daughter on the Nemechek protocol for SIBO a few months ago and all of those symptoms cleared up.  I wrote and update about it on here not long ago.  You should read it!

 

ElitaSue Newbie
ElitaSue
Posted

An endocrinologist diagnosed my Celiacs, my presenting symptoms were hypoglycemia and seizure disorder. He put me on a "grain free/sugar free" diet. If your intestines have been heavily damaged by Celiacs it will take a long time to recover fully (if ever). Perhaps you have leaky gut going on and candidiasis - which will make you feel terrible! Might be a good idea to go to an endocrinologist and have your adrenal, thyroid, blood sugar checked - or do a low carb diet. From the sound of your symptoms I think candidiasis, which you can clear up with sugar, grain free (no corn, oats, rice, or and other dicot grains) low carb, heigh protein, vege diet. Also may be having endocrine pancreatic insufficiency, so good idea to take Pancreatin enzyme along with each meal. Best of luck, don't give up and definitely don't go back to gluten. : )

 

kam00096 Contributor
kam00096
Posted
  • Author

Lots of things for me to think about. Right now I'm back to completely freaking out that it's nothing to do with celiac and is something way more serious. Thanks for all the suggestions though. 

JoyVale Newbie
JoyVale
Posted

Before you freak out, try the no carb diet. Find the discipline. Then after about a month, introduce one carb item. See how you feel. With strict discipline, in no time you'll have a complete list of safe foods and you'll know exactly how to eat.  Plus, you'll lose a lot of weight. Go on girl, you can do it

knitty kitty Grand Master
knitty kitty
Posted

Celiac Disease causes malabsorption which results in malnutrition.  

Has your doctor checked you for vitamin and mineral deficiencies?  

Many Celiacs develop deficiencies in Vitamin D and the B vitamins, calcium, magnesium and zinc.  

Even on a gluten free diet, vitamin deficiencies can occur.  

Trying the low histamine diet may help, too. No grains, no processed foods, no dairy, no nightshades, no fermented foods.  

Hope this helps.

 

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