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Anyone With Food Allergies And No Gi Symptoms?

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adab8ca Enthusiast
adab8ca
Posted

I am a neuro celiac only: 41 years a silent celiac it seems and then 1 year of total mental and physical meltdown...Never had GI symptoms with my celiac, but BAD depression/anxiety and severe neuropathy. I am 4 months gluten-free and not really feeling much better (although I have put on some weight-before I was diagnosed, I lost about 25 pounds without trying but with no stomach symptoms to explain it, and now I am up about 12 pounds.)I do realize that with the total villous atrophy and being off scale on the TTG I have some healing to do. Now I am learning about other food intolerances and I am wondering if I could have these without GI symptoms and if I do for example have an intolerance to lactose, would eating lactose slow the healing of my villi? Also reading scary things about corn, so I am not a happy camper.

I am very strict with my diet, avoiding most processed foods. I would ask my doctors but because I am a non standard patient (medical mystery to the GP, GI and neurologist that I have seen in my travels for a diagnosis)they really don't know what to do with me.

I just want to do everything I can to feel better but I don't even know what that is. My stomach seems fine but everything else hurts (joints, nerves)

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ravenwoodglass Mentor
ravenwoodglass
Posted

Are you supplementing with sublingual B12? If you not you may want to and see if it helps. It can take what seems like a really long time for the joint and neuro symptoms to resolve. For me it also took avoiding soy for the joint pain to go away completely. You may want to try eliminating soy and see if that helps. Do be sure to avoid any risk of CC and check all your supplements and script and OTC meds if you are not already.

cassP Contributor
cassP
Posted

I am a neuro celiac only: 41 years a silent celiac it seems and then 1 year of total mental and physical meltdown...Never had GI symptoms with my celiac, but BAD depression/anxiety and severe neuropathy. I am 4 months gluten-free and not really feeling much better (although I have put on some weight-before I was diagnosed, I lost about 25 pounds without trying but with no stomach symptoms to explain it, and now I am up about 12 pounds.)I do realize that with the total villous atrophy and being off scale on the TTG I have some healing to do. Now I am learning about other food intolerances and I am wondering if I could have these without GI symptoms and if I do for example have an intolerance to lactose, would eating lactose slow the healing of my villi? Also reading scary things about corn, so I am not a happy camper.

I am very strict with my diet, avoiding most processed foods. I would ask my doctors but because I am a non standard patient (medical mystery to the GP, GI and neurologist that I have seen in my travels for a diagnosis)they really don't know what to do with me.

I just want to do everything I can to feel better but I don't even know what that is. My stomach seems fine but everything else hurts (joints, nerves)

you're NOT a "medical mystery". according to a study out of Columbia University (even tho i do not agree with everything Dr. Green says): only 1 in 6 Celiacs have any gut symptoms.

now- since you dont- i imagine it must be hard to judge how you're healing- if i were you i would in addition to no gluten, i would limit or avoid dairy for a good 6 months at least. you could limit corn & sugar too. it's hard to tell you what to do- many people on here are just fine with corn- but i am totally not.

also- just try to eat really healthy with lots of whole foods, veggies & fruits & lean organic meat. try to keep your "gluten free" desserts and cereals and breads to a minimum- try to save them for "cheats".

and then to judge how you're healing- you should retest your ttg in 6 months or a year- to see if the numbers have come down.

and like many of us are doing right now- keep up with your doc, get everything tested especially vitamin B12 & D... a deficiency in B12 can cause peripheal neuropathy.

good luck and welcome :)

SaraKat Contributor
SaraKat
Posted

I have no gut issues. The only symptom I had was joint pain in the ribcage area and I have been anemic for years with no explanation. I have been gluten-free since September and don't seem to have any other food issues- I still drink milk and eat things with corn. Good Luck!

Skylark Collaborator
Skylark
Posted

If you eat something you're allergic or intolerant to, you will get symptoms. That's the definition of allergy/intolerance. The problem is pain like you're noticing can can be pretty slow. It might take eating the food for a few days to get pain, or you might have a reaction that's delayed for a day or two. You might consider talking to your Dr. about a food allergy panel, then eliminate those foods for a time and see if you feel better. You will not necessarily react to everything that comes up positive in an allergy panel, so your Dr. can talk to you about how you eliminate foods and then challenge.

The only thing that may cause a celiac reaction is oats, as probably 10-15% of celiacs can't eat them. You would react to those with your "gluten" reaction, whatever that is. Lactose won't do villous damage, but it seems to me that eating something that gives you cramping and D wouldn't be helpful? Sort of common sense there. A lot of celiacs have trouble with casein too, because of cross-reactions with the anti-gliadin antibodies. I strongly suggest you eliminate dairy entirely for a time and see if it helps. Once they heal, some celiacs can tolerate dairy again, and you may also become more lactose tolerant.

Anything on the "big 8" list -- milk, eggs, peanuts, tree nuts, fish, shellfish, soy, wheat -- is more likely to cause a reaction than other foods. People can have corn allergies and sensitivities but it's somewhat more uncommon. (And sometimes organic corn is tolerated but not GMO.)

T.H. Community Regular
T.H.
Posted

I have neuro and joint pain symptoms. They didn't resolve on a gluten free diet, but they are slowly resolving on a super gluten free diet.

However, it's a pretty crazy diet. gluten-free grains, as well as nuts and beans, tend to have too much gluten cc for me to handle unless I choose them carefully, veggies and fruits that have come into contact with gluten cause me trouble (sprays or wax coatings with gluten, or with gluten cc'd ingredients), meat that is cut up near gluten coated meat tends to cc it too much for me to handle. Even gluten containing soap used on processing machines could be an issues, it seems.

Perhaps I'm wrong and its something else, but so far, when I eliminate everything that has ever touched gluten, or as close to it as I can get, then I seem to get better.

Perhaps lowering your gluten content might help you too?

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    • SamAlvi
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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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